| Our community members participate in this at an individual level, and as an organisation, we meet with industry policy holders. | Cáncer
> Cáncer: mujeres | Asociación regulatoria
> Trabajando con organismos reguladores | 10.000 | International | Rarely | 119028011659 |
| We collaborated on an externally-led Patient-Focused Drug Development meeting with the FDA [Food and Drug Administration] in 2025. | Neurológico
> Esclerosis múltiple | Asociación regulatoria
> Trabajando con organismos reguladores | 100.000 | National | Rarely | 119039458452 |
| We engage in education, guidance, and institutional dialogue initiatives to promote informed, equitable decisions that place community well-being at their centre. | Defensa del paciente
> Entrenamiento | Asociación regulatoria
> Trabajando con organismos reguladores | 100.000 | International | Regularly | 119063146174 |
| Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed. | Cáncer
> Cáncer: sarcoma | Asociación regulatoria
> Trabajando con organismos reguladores | 10.000 | International | Sometimes | 119064713792 |
| Just recently hosted an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting and attended FDA [Food and Drug Administration] meetings with industry partners. | Raro
> Enfermedades raras: genéticas | Asociación regulatoria
> Trabajando con organismos reguladores | 5000 | International | Regularly | 119065526277 |
| ... We work closely with the FDA and other drug agencies, like EMA [European Medicines Agency] and PDMA [Pharmaceuticals and Medical Devices Agency], to look at endpoints for drug trials, or how to improve drug trials to benefit sponsors and patients. | Riñón
> Enfermedades renales | Asociación regulatoria
> Trabajando con organismos reguladores | 100.000 | National | Regularly | 119070696943 |
| Participation in activities like PDUFA [Prescription Drug User Fee Act] and MDUFA [Medical Device User Fee and Modernization Act] discussions. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Trabajando con organismos reguladores | 100.000 | National | Rarely | 119078556821 |
| We have a policy committee and weigh in on public policy issues through education and advocacy. | Crónico
> Paliativo | Asociación regulatoria
> Trabajando con organismos reguladores | 100 | National | Regularly | 119078649119 |
| Discussions about review and approvals of new screening technologies. | Cáncer
> Cáncer: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Rarely | 119045117950 |
| Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations. | Defensa del paciente
> Entrenamiento | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | International | Regularly | 119063146174 |
| ... Our government relations team responds to comment letters and regularly talks with CMS [Centers for Medicare & Medicaid Services] to ensure best outcomes. | Riñón
> Enfermedades renales | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Regularly | 119070696943 |
| Our organization has participated in responses to ICER [Institute for Clinical and Economic Review]. | Respiratorio
> Enfermedades pulmonares | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | International | Rarely | 119078556838 |
| We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews. | Reumático
> Lupus | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Regularly | 119082751826 |
| Testifying on behalf of pharma & device companies in front of the FDA [Food and Drug Administration]. | Trasplantes
> Trasplantes: corazón y pulmón | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 5000 | Local | Regularly | 119014633092 |
| Discussions with FDA [Food and Drug Administration]. | Salud general
> Comunidades diversas | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | International | Rarely | 119026771169 |
| I personally have testified before the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]. | Trasplantes
> Trasplantes: corazón y pulmón | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 1000 | Regional | Sometimes | 119037216727 |
| We collaborated on an externally-led Patient-Focused Drug Development meeting with the FDA [Food and Drug Administration] in 2025. | Neurológico
> Esclerosis múltiple | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Rarely | 119039458452 |
| Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 5000 | National | Sometimes | 119046591776 |
| Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions. | Cáncer
> Cáncer: otro | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | International | Regularly | 119047535935 |
| Communications with FDA [Food and Drug Administration], participating in public comment sessions. | Sangre
> Anemia | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 5000 | National | Regularly | 119050770645 |
| We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | International | Regularly | 119054948119 |
| Testifying at ODAC [Oncologic Drugs Advisory Committee]. | Cáncer
> Cáncer: otro | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | International | Sometimes | 119059387919 |
| Just recently hosted an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting and attended FDA [Food and Drug Administration] meetings with industry partners. | Raro
> Enfermedades raras: genéticas | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 5000 | International | Regularly | 119065526277 |
| EL-PFDD [Externally-Led Patient-Focused Drug Development] FDA [Food and Drug Administration] Patient Listening Sessions. | Defensa del paciente
> Activista de salud | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | National | Regularly | 119066130575 |
| We have testified at FDA [Food and Drug Administration] Adcomms [Advisory Committees] and have helped organise Patient-Focused Drug Development meetings. | Neuromuscular
> Enfermedades neuromusculares: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Sometimes | 119068005400 |
| Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration]. | Reumático
> Lupus | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Regularly | 119070039917 |
| We have held multiple externally led patient-focused drug development (EL-PFDD [Externally Led Patient-Focused Drug Development]) meetings with the FDA [Food and Drug Administration]. We invite regulators to all our scientific workshops. We educate patients and facilitate meetings with regulators on an ongoing basis. | Riñón
> Enfermedades renales | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Regularly | 119070696943 |
| We provide public comment on new drugs to the FDA [Food and Drug Administration]. | Sangre
> Enfermedad de células falciformes | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | Regional | Sometimes | 119074242460 |
| Participation in activities like PDUFA [Prescription Drug User Fee Act] and MDUFA [Medical Device User Fee and Modernization Act] discussions. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 100.000 | National | Rarely | 119078556821 |
| Coalition work. | Raro
> Enfermedades raras: derechos de los pacientes | Asociación regulatoria
> Con otros defensores de la salud | 100.000 | National | Sometimes | 119050874740 |
| We lead the national coalition EACH [Ensuring Access through Collaborative Health]/PIC [Patient Inclusion Council] coalition, working on government drug affordability reviews. | Autoinmune
> Autoinmune: otro | Asociación regulatoria
> Con otros defensores de la salud | 100.000 | International | Regularly | 119071535440 |
| In Arizona and, on occasion, more broadly across the USA, we collaborate with other cancer groups, organisations, and legislators. | Cáncer
> Cáncer: sangre | Asociación regulatoria
> Con otros defensores de la salud | Do not know | Regional | Sometimes | 119078394447 |
| Lobbying on the state and federal level on rules/laws that impact our patients. | Salud general
> Prestación de servicios sanitarios | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | National | Sometimes | 119011450240 |
| Our Cancer Policy Institute advocates for equitable access to medicines to government organizations such as CMS [Centers for Medicare & Medicaid Services]. | Cáncer
> Cáncer: otro | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | International | Regularly | 119020437168 |
| We include a discussion of medication pricing in our conversations with the state and federal government employees. We are also pushing for lifetime coverage of physical therapy for people with PD [Parkinson's Disease], as maintaining balance as the disease progresses saves both providers and insurers money in the long run. | Neurodegenerativo
> Parkinson's | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | Regional | Rarely | 119020536956 |
| Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures. | Reumático
> Lupus | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 5000 | Regional | Sometimes | 119037794627 |
| Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures. | Reumático
> Lupus | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 5000 | Regional | Sometimes | 119037794627 |
| ...The organization's flagship event - the annual Indo US Bridging RARE Summit brings together rare disease stakeholders, including scientists, patient advocates, government officials, biopharma executives, and policy experts who share a common goal: transforming the future of care for the 400 million people worldwide living with rare diseases. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | International | Regularly | 119038170136 |
| Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office. | Cáncer
> Cáncer: investigación médica | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 1000 | National | Rarely | 119044810653 |
| We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | International | Regularly | 119054948119 |
| We frequently engage on state and federal issues related to patient access to care. | Respiratorio
> Enfermedades pulmonares | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | National | Rarely | 119055217525 |
| We regularly advocate through sign-on letters, policymaker discussions, and policy related programming. | Cáncer
> Cáncer: comunidades diversas | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 5000 | National | Sometimes | 119055664199 |
| We both authored and signed on to letters to state and federal (private insurance and CMS [Centers for Medicare & Medicaid Services]) on a variety of issues. | Cardiovascular
> Enfermedades cardiovasculares y del corazón | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | Over 100,000 | International | Sometimes | 119058234393 |
| Campaigning with KidneyCAN for increased federal research funding. | Cáncer
> Cáncer: riñón | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 1000 | Regional | Sometimes | 119059282158 |
| The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | National | Regularly | 119059491202 |
| We communicate with federal representatives about the importance of funding. | Cáncer
> Cáncer: cerebro | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | We do not communicate with patients directly | National | Sometimes | 119061001133 |
| We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years]. | Defensa del paciente
> Activista de salud | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | Do not know | National | Regularly | 119065430409 |
| Just one example: we continually advocate (both through regulatory comments and now legislation) for adequate reimbursement for new and innovative drugs in the ESRD [End-Stage Renal Disease] space through TDAPA [Transitional Drug Add-on Payment Adjustment] and a sustainable post-TDAPA payment pathway. | Riñón
> Enfermedades renales | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | Over 100,000 | National | Regularly | 119068073151 |
| We work with state, federal policymakers and health insurers. | Salud general
> Obesidad | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | Over 100,000 | National | Sometimes | 119068989651 |
| As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity. | VIH
> VIH y salud sexual | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | Regional | Regularly | 119073874628 |
| Supported efforts to have an ICD-10 (International Classification of Diseases, 10th Revision) code for VEXAS syndrome. | Raro
> Enfermedades autoinflamatorias | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 1000 | International | Sometimes | 119074154009 |
| We provide public comment on new drugs to the FDA. We regularly organize delegations to Capitol Hill to advocate for Medicaid and Medicare support for sickle cell treatment. We advocate with New Jersey legislators for support for sickle cell treatment and services. | Sangre
> Enfermedad de células falciformes | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 10.000 | Regional | Sometimes | 119074242460 |
| Testifying at PDAB meetings [submitting comments to a Patient Drug Affordability Board during a public meeting, hearing, or review process] writing letters to decision-makers at state and federal level [USA]. | Raro
> Fibrosis quística | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 10.000 | National | Sometimes | 119078388026 |
| In Arizona and occasionally, the U.S., we collaborate with other cancer groups, organizations, and legislators who support legislation that will help cancer research, the medical/oncology groups, and cancer patients and families. | Cáncer
> Cáncer: sangre | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | Do not know | Regional | Sometimes | 119078394447 |
| We have a policy committee and weigh in on public policy issues through education and advocacy. | Crónico
> Paliativo | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | National | Regularly | 119078649119 |
| We include a discussion of medication pricing in our discussions with state and federal government employees. | Neurodegenerativo
> Parkinson's | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 100.000 | Regional | Rarely | 119020536956 |
| We submitted comments to CMS [Centers for Medicare & Medicaid Services] regarding the price negotiation of mental health and neurological conditions. | Salud mental
> Salud mental: estigma | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | We do not communicate with patients directly | National | Sometimes | 119024698241 |
| IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 100 | International | Regularly | 119038170136 |
| Testify before prescription drug affordability boards. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 1000 | Local | Regularly | 119044404340 |
| Communications with FDA [Food and Drug Administration], participating in public comment sessions. | Sangre
> Anemia | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 5000 | National | Regularly | 119050770645 |
| We regularly advocate through sign-on letters, policymaker discussions, and policy related programming. | Cáncer
> Cáncer: comunidades diversas | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 5000 | National | Sometimes | 119055664199 |
| We both authored and signed on to letters to state and federal (private insurance and CMS [Centers for Medicare & Medicaid Services]) on a variety of issues. | Cardiovascular
> Enfermedades cardiovasculares y del corazón | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | Over 100,000 | International | Sometimes | 119058234393 |
| ... Testifying at IRA [Inflation Reduction Act] listening sessions to elevate the patient experience. | Cáncer
> Cáncer: otro | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 100.000 | International | Sometimes | 119059387919 |
| The Community Liver Alliance engages at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. The Community Liver Alliance's advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 100.000 | National | Regularly | 119059491202 |
| Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed. | Cáncer
> Cáncer: sarcoma | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 10.000 | International | Sometimes | 119064713792 |
| We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 5000 | Regional | Regularly | 119069774462 |
| ... Our government relations team responds to comment letters and regularly talks with CMS [Centers for Medicare & Medicaid Services] to ensure best outcomes. | Riñón
> Enfermedades renales | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 100.000 | National | Regularly | 119070696943 |
| We provided comments to federal and state regulators around drug pricing in the 340B program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics] when asking for community input to proposed policy changes. | Educación del paciente
> Información del paciente | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 5000 | National | Sometimes | 119073380443 |
| We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. We host roundtables and advocacy awareness days with legislators where we raise awareness of current problems and offer solutions. One recent event was with the Governor of Virginia. We are planning a Spine Health Fair at the US Capitol in September. | Salud general
> Estilo de vida | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 100.000 | National | Sometimes | 119074217249 |
| We provide public comment on new drugs to the FDA [Food and Drug Administration]. | Sangre
> Enfermedad de células falciformes | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 10.000 | Regional | Sometimes | 119074242460 |
| Work with NYSTAG [New York State Technical Advisory Group-generally refers to ad-hoc or specialised panels of industry experts, academics, and stakeholders assembled by NY state agencies to advise on specific policies, healthcare, or emerging technologies.]. | Salud general
> Prestación de servicios sanitarios | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 5000 | Regional | Sometimes | 119078326039 |
| Testifying at PDAB meetings [submitting comments to a Patient Drug Affordability Board during a public meeting, hearing, or review process] writing letters to decision-makers at state and federal level [USA]. | Raro
> Fibrosis quística | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 10.000 | National | Sometimes | 119078388026 |
| IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community. | Raro
> Enfermedades raras: la mayoría de los tipos | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 100 | International | Regularly | 119038170136 |
| Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office. | Cáncer
> Cáncer: investigación médica | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 1000 | National | Rarely | 119044810653 |
| We communicate with federal representatives about the importance of funding. | Cáncer
> Cáncer: cerebro | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | We do not communicate with patients directly | National | Sometimes | 119061001133 |
| We provide public comment on new drugs to the FDA. We regularly organize delegations to Capitol Hill to advocate for Medicaid and Medicare support for sickle cell treatment. We advocate with New Jersey legislators for support for sickle cell treatment and services. | Sangre
> Enfermedad de células falciformes | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 10.000 | Regional | Sometimes | 119074242460 |
| ... We are active in Lupus Caucus [Congressional Lupus Caucus, a bipartisan group of lawmakers focused on raising awareness about lupus and securing federal funding for research and education] | Reumático
> Lupus | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 100.000 | National | Regularly | 119082751826 |
| Government Relations/Advocacy team signs letters in support of lower drug prices. | Cáncer
> Cáncer: próstata | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100.000 | National | Sometimes | 119011723588 |
| We include a discussion of medication pricing in our discussions with state and federal government employees. | Neurodegenerativo
> Parkinson's | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100.000 | Regional | Rarely | 119020536956 |
| Testify before prescription drug affordability boards. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 1000 | Local | Regularly | 119044404340 |
| Drug assistance programs and co-pay assistance foundation. | Cáncer
> Cáncer: la mayoría de los tipos | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 5000 | International | Sometimes | 119045428228 |
| We frequently engage on state and federal issues related to patient access to care, occasionally weighing in on issues adjacent to drug pricing, though it is not our primary focus. | Respiratorio
> Enfermedades pulmonares | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100.000 | National | Rarely | 119055217525 |
| The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100.000 | National | Regularly | 119059491202 |
| Promoting 340B reforms [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics]. | Defensa del paciente
> Activista de salud | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 10.000 | Regional | Regularly | 119059636045 |
| Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing. | Cáncer
> Cáncer: cerebro | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 1000 | National | Rarely | 119061176158 |
| Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations. | Defensa del paciente
> Entrenamiento | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100.000 | International | Regularly | 119063146174 |
| We bring patient perspectives opposing use of QUALYs [quality-adjusted life years] and opposing importing drug prices from other countries [oustide of the USA], especially those that use QALYs. | Defensa del paciente
> Activista de salud | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | Do not know | National | Regularly | 119065430409 |
| Just one example: we continually advocate (both through regulatory comments and now legislation) for adequate reimbursement for new and innovative drugs in the ESRD [End-Stage Renal Disease] space through TDAPA [Transitional Drug Add-on Payment Adjustment] and a sustainable post-TDAPA payment pathway. | Riñón
> Enfermedades renales | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | Over 100,000 | National | Regularly | 119068073151 |
| We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 5000 | Regional | Regularly | 119069774462 |
| ETSI [Ending Transmission of Sexual Infections] Health Clinic represents the interests of patients—particularly those impacted by HIV, LGBTQ+ individuals, and underserved communities—by advocating for affordable access to life-saving medications. | VIH
> VIH y salud sexual | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100 | Regional | Regularly | 119073874628 |
| Pharma pricing. | Salud general
> Obesidad | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100.000 | National | Regularly | 119076659022 |
| With our new Public Policy department, this may come up as an opportunity to advocate for drug pricing. | Neurodegenerativo
> Parkinson's | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 100.000 | National | Sometimes | 119078318937 |
| Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years. | Sangre
> Enfermedad de células falciformes | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 5000 | National | Sometimes | 119079213376 |
| We have participated in the IRA [Inflation Reduction Act] price negotiation round tables. | Respiratorio
> Asma y alergia | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 100.000 | National | Regularly | 119011501209 |
| We have participated in the IRA [Inflation Reduction Act of 2022] price negotiation round tables [The IRA provides Medicare (the US federal health insurance program for people age 65 and older) powers to negotiate lower prescription costs]. | Respiratorio
> Asma y alergia | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 100.000 | National | Regularly | 119011501209 |
| We submitted comments to CMS [Centers for Medicare & Medicaid Services] regarding the price negotiation of mental health and neurological conditions. | Salud mental
> Salud mental: estigma | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | We do not communicate with patients directly | National | Sometimes | 119024698241 |
| ... meetings with state office of CMS [Centers for Medicare & Medicaid Services]. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 1000 | Local | Regularly | 119044404340 |
| Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences. | Raro
> Enfermedades raras: la mayoría de los tipos | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 5000 | National | Sometimes | 119046591776 |
| We educate advocates on outreach to Patient Drug Affordability Boards [Patient Drug Affordability Boards are state government boards that review prescription drug prices and, in some US states, can take actions to help make drugs more affordable.] | Cáncer
> Cáncer: comunidades diversas | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 100.000 | National | Sometimes | 119054172981 |
| The Community Liver Alliance's advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 100.000 | National | Regularly | 119059491202 |
| PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees. | Defensa del paciente
> Activista de salud | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | We do not communicate with patients directly | National | Regularly | 119064160791 |
| We participated in the Medicare price negotiation roundtables and town hall last year. | Respiratorio
> Asma y alergia | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 100.000 | National | Regularly | 119069847466 |
| Actively participate in patient-focused drug development with the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]/HHS [U.S. Department of Health and Human Services] Prescription Access discussions. | Reumático
> Lupus | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 100.000 | National | Regularly | 119070039917 |
| We lead the national coalition EACH [Ensuring Access through Collaborative Health]/PIC [Patient Inclusion Council] coalition, working on government drug affordability reviews. | Autoinmune
> Autoinmune: otro | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 100.000 | International | Regularly | 119071535440 |
| We provided comments to federal and state regulators around drug pricing in the 340B program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics] when asking for community input to proposed policy changes. | Educación del paciente
> Información del paciente | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 5000 | National | Sometimes | 119073380443 |
| We communicate to them that many HD [Huntington's disease] families are low income as often the one making the money is the one with HD. So cost of meds can impact whether they can afford the meds. | Neurodegenerativo
> Enfermedad de Huntington | Defensa de precios y asequibilidad
> Abordar las barreras de costes para las personas con bajos ingresos y vulnerables | 100.000 | National | Sometimes | 119017688949 |
| Health insurance companies and health insurance reps organize activities for low income communities. | Personas mayores
> Personas mayores | Defensa de precios y asequibilidad
> Abordar las barreras de costes para las personas con bajos ingresos y vulnerables | Over 100,000 | International | Sometimes | 119035935608 |
| ETSI [Ending Transmission of Sexual Infections] Health Clinic represents the interests of patients—particularly those impacted by HIV, LGBTQ+ individuals, and underserved communities—by advocating for affordable access to life-saving medications and healthcare services. Through its participation in programs such as the 340B Drug Pricing Program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics], ETSI works to ensure that low-income and uninsured patients have access to reduced-cost prescription medications, including HIV treatment and prevention medications like PrEP. | VIH
> VIH y salud sexual | Defensa de precios y asequibilidad
> Abordar las barreras de costes para las personas con bajos ingresos y vulnerables | 100 | Regional | Regularly | 119073874628 |
| We regularly provide comments to state P&T [Pharmacy and Therapeutics] committees regarding their formulary inclusions and exclusions. | Respiratorio
> Asma y alergia | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 100.000 | National | Regularly | 119011501209 |
| PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees. | Defensa del paciente
> Activista de salud | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | We do not communicate with patients directly | National | Regularly | 119064160791 |
| Invitation to the White House in 2024 to discuss cancer research funding with First Lady's office. Lastly, I've co-written op-eds and on the local level recorded a video (ACS) targeting NYS lawmakers and the advocacy for increased equity and access to biomarker testing for patients. | Cáncer
> Cáncer: investigación médica | Defensa de precios y asequibilidad
> Participar en campañas de concienciación | 1000 | National | Rarely | 119044810653 |
| Advocacy in access to care issues. | Cáncer
> Cáncer: la mayoría de los tipos | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 10.000 | Regional | Sometimes | 119011457943 |
| Our Cancer Policy Institute advocates for equitable access to medicines to government organizations such as CMS [Centers for Medicare & Medicaid Services]. | Cáncer
> Cáncer: otro | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | International | Regularly | 119020437168 |
| We include a discussion of medication pricing in our conversations with the state and federal government employees. We are also pushing for lifetime coverage of physical therapy for people with PD [Parkinson's Disease], as maintaining balance as the disease progresses saves both providers and insurers money in the long run. | Neurodegenerativo
> Parkinson's | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | Regional | Rarely | 119020536956 |
| ... We sent letters to States to request that they change their step requirements for access to mental health treatments. | Salud mental
> Salud mental: estigma | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | We do not communicate with patients directly | National | Sometimes | 119024698241 |
| Invitation to the White House in 2024 to discuss cancer research funding with First Lady's office. Lastly, I've co-written op-eds and on the local level recorded a video (ACS) targeting NYS lawmakers and the advocacy for increased equity and access to biomarker testing for patients. | Cáncer
> Cáncer: investigación médica | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | National | Rarely | 119044810653 |
| Drug assistance programs and co-pay assistance foundation. | Cáncer
> Cáncer: la mayoría de los tipos | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 5000 | International | Sometimes | 119045428228 |
| We frequently engage on state and federal issues related to patient access to care. | Respiratorio
> Enfermedades pulmonares | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Rarely | 119055217525 |
| The Community Liver Alliance elevates patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Regularly | 119059491202 |
| We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug. | Neurológico
> Migraña/otros trastornos de cefalea | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Rarely | 119060019780 |
| Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations. | Defensa del paciente
> Entrenamiento | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | International | Regularly | 119063146174 |
| State level Medicaid. | Cáncer
> Cáncer: la mayoría de los tipos | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | National | Rarely | 119068136322 |
| We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 5000 | Regional | Regularly | 119069774462 |
| We are currently addressing access to biologic medications. | Raro
> Enfermedades raras: inmune | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 10.000 | National | Sometimes | 119069849386 |
| Actively participate in patient-focused drug development with the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]/HHS [U.S. Department of Health and Human Services] Prescription Access discussions. | Reumático
> Lupus | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Regularly | 119070039917 |
| We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options. | Salud general
> Estilo de vida | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Sometimes | 119074217249 |
| Pharma pricing, coverage, indications. | Salud general
> Obesidad | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Regularly | 119076659022 |
| We have on only a few occasions advocated for better access to newer drugs. | Salud mental
> Salud mental: estigma | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | Over 100,000 | International | Rarely | 119078209025 |
| Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years. | Sangre
> Enfermedad de células falciformes | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 5000 | National | Sometimes | 119079213376 |
| ... convene MAPRx [Medicare Access for Patients Rx] for Medicare Part D, etc.[MAPRx is guided by the idea that every Medicare Part D beneficiary should have timely, affordable access to the medications they need to live a healthy life.] | Reumático
> Lupus | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 100.000 | National | Regularly | 119082751826 |
| ... We sent letters to States to request that they change their step requirements for access to mental health treatments. | Salud mental
> Salud mental: estigma | Mejora de las vías de acceso
> Abordar las disparidades en el acceso y la gestión | We do not communicate with patients directly | National | Sometimes | 119024698241 |
| We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Mejora de las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 5000 | Regional | Regularly | 119069774462 |
| IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community. | Raro
> Enfermedades raras: la mayoría de los tipos | Mejora de las vías de acceso
> Mejora del acceso a terapias raras/ultrararas | 100 | International | Regularly | 119038170136 |
| Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions. | Cáncer
> Cáncer: otro | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 100.000 | International | Regularly | 119047535935 |
| Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions. | Cáncer
> Cáncer: otro | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 100.000 | International | Regularly | 119047535935 |
| Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting. | Neurodegenerativo
> Demencia | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | Do not know | National | Sometimes | 119052219350 |
| Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207 | Cáncer
> Cáncer: mama | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 100.000 | International | Sometimes | 119052475951 |
| We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years]. | Defensa del paciente
> Activista de salud | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | Do not know | National | Regularly | 119065430409 |
| Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration]. | Reumático
> Lupus | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 100.000 | National | Regularly | 119070039917 |
| We have held multiple externally led patient-focused drug development (EL-PFDD [Externally Led Patient-Focused Drug Development]) meetings with the FDA [Food and Drug Administration]. | Riñón
> Enfermedades renales | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 100.000 | National | Regularly | 119070696943 |
| As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity. | VIH
> VIH y salud sexual | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 100 | Regional | Regularly | 119073874628 |
| We provide data and real-world knowledge. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Aportaciones del paciente basadas en evidencia
> Proporcionar evidencia del mundo real (RWE) a las agencias reguladoras | 100.000 | National | Sometimes | 119045306046 |
| The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Aportaciones del paciente basadas en evidencia
> Proporcionar evidencia del mundo real (RWE) a las agencias reguladoras | 100.000 | National | Regularly | 119059491202 |
| ETSI [Ending Transmission of Sexual Infections] Health Clinic collaborates with pharmacy partners and public health systems to highlight the real-world impact that medication costs have on patients living with HIV and those at risk. By documenting patient barriers to medication access, the clinic helps inform healthcare partners and policymakers about the financial and systemic challenges patients face. | VIH
> VIH y salud sexual | Aportaciones del paciente basadas en evidencia
> Proporcionar evidencia del mundo real (RWE) a las agencias reguladoras | 100 | Regional | Regularly | 119073874628 |
| We communicate to them that many HD [Huntington's Disease] families are low income, as often the one making the money is the one with HD. | Neurodegenerativo
> Enfermedad de Huntington | Aportaciones del paciente basadas en evidencia
> Aprovechar las historias de pacientes y los relatos de experiencias vividas | 100.000 | National | Sometimes | 119017688949 |
| The Community Liver Alliance engages at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies. | Hígado
> Enfermedades hepáticas: la mayoría de los tipos | Aportaciones del paciente basadas en evidencia
> Aprovechar las historias de pacientes y los relatos de experiencias vividas | 100.000 | National | Regularly | 119059491202 |
| We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug. | Neurológico
> Migraña/otros trastornos de cefalea | Aportaciones del paciente basadas en evidencia
> Aprovechar las historias de pacientes y los relatos de experiencias vividas | 100.000 | National | Rarely | 119060019780 |
| Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing. | Cáncer
> Cáncer: cerebro | Aportaciones del paciente basadas en evidencia
> Aprovechar las historias de pacientes y los relatos de experiencias vividas | 1000 | National | Rarely | 119061176158 |
| Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting. | Neurodegenerativo
> Demencia | Aportaciones del paciente basadas en evidencia
> Realizar encuestas/investigaciones para generar datos | Do not know | National | Sometimes | 119052219350 |
| Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207 | Cáncer
> Cáncer: mama | Aportaciones del paciente basadas en evidencia
> Realizar encuestas/investigaciones para generar datos | 100.000 | International | Sometimes | 119052475951 |
| As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity. | VIH
> VIH y salud sexual | Aportaciones del paciente basadas en evidencia
> Traducir evidencias e ideas en aportaciones para políticas | 100 | Regional | Regularly | 119073874628 |
| ... We work closely with the FDA and other drug agencies, like EMA [European Medicines Agency] and PDMA [Pharmaceuticals and Medical Devices Agency], to look at endpoints for drug trials, or how to improve drug trials to benefit sponsors and patients. | Riñón
> Enfermedades renales | Diagnóstico y entrega de medicamentos
> Colaborar en el diseño de ensayos clínicos | 100.000 | National | Regularly | 119070696943 |
| Supporting legislation for multiple cancer early detection, including TV appearances and social media. | Cáncer
> Cáncer: cuidadores, familia, amigos | Diagnóstico y entrega de medicamentos
> Apoyo al cribado y la detección temprana | 1000 | Regional | Regularly | 119036085844 |
| Discussions about review and approvals of new screening technologies. | Cáncer
> Cáncer: la mayoría de los tipos | Diagnóstico y entrega de medicamentos
> Apoyo al cribado y la detección temprana | 100.000 | National | Rarely | 119045117950 |
| USPTF [U.S. Preventive Services Task Force] input. | Cáncer
> Cáncer: hombres | Diagnóstico y entrega de medicamentos
> Apoyo al cribado y la detección temprana | 100.000 | National | Sometimes | 119050776275 |
| Sit on several panels. | Cáncer
> Cáncer: mama | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100 | Regional | Regularly | 119037236943 |
| ... The organization's flagship event - the annual Indo US Bridging RARE Summit brings together rare disease stakeholders, including scientists, patient advocates, government officials, biopharma executives, and policy experts who share a common goal: transforming the future of care for the 400 million people worldwide living with rare diseases. | Raro
> Enfermedades raras: la mayoría de los tipos | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100 | International | Regularly | 119038170136 |
| Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207 | Cáncer
> Cáncer: mama | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100.000 | International | Sometimes | 119052475951 |
| We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. We host roundtables and advocacy awareness days with legislators where we raise awareness of current problems and offer solutions. One recent event was with the Governor of Virginia. We are planning a Spine Health Fair at the US Capitol in September. | Salud general
> Estilo de vida | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100.000 | National | Sometimes | 119074217249 |
| We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews, active in Lupus Caucus, convene MAPRx [Medicare Access for Patients Rx] for Medicare Part D, etc.[MAPRx is guided by the idea that every Medicare Part D beneficiary should have timely, affordable access to the medications they need to live a healthy life.] | Reumático
> Lupus | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100.000 | National | Regularly | 119082751826 |
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32 menciones
