| Our community members participate in this at an individual level, and as an organisation, we meet with industry policy holders. | Câncer
> Câncer: feminino | Parceria regulatória
> Trabalhando com órgãos 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
> Esclerose múltipla | Parceria regulatória
> Trabalhando com órgãos 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. | Defesa do paciente
> Treinamento | Parceria regulatória
> Trabalhando com órgãos reguladores | 100.000 | International | Regularly | 119063146174 |
| Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed. | Câncer
> Câncer: sarcoma | Parceria regulatória
> Trabalhando com órgãos 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
> Doenças raras: genéticas | Parceria regulatória
> Trabalhando com órgãos reguladores | 5.000 | 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. | Rim
> Doenças renais | Parceria regulatória
> Trabalhando com órgãos 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
> Doenças raras: maioria dos tipos | Parceria regulatória
> Trabalhando com órgãos reguladores | 100.000 | National | Rarely | 119078556821 |
| We have a policy committee and weigh in on public policy issues through education and advocacy. | Crônico
> Paliativo | Parceria regulatória
> Trabalhando com órgãos reguladores | 100 | National | Regularly | 119078649119 |
| Discussions about review and approvals of new screening technologies. | Câncer
> Câncer: a maioria dos tipos | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e 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. | Defesa do paciente
> Treinamento | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e 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. | Rim
> Doenças renais | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 100.000 | National | Regularly | 119070696943 |
| Our organization has participated in responses to ICER [Institute for Clinical and Economic Review]. | Respiratório
> Doenças pulmonares | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 100.000 | International | Rarely | 119078556838 |
| We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews. | Reumático
> Lúpus | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | 100.000 | National | Regularly | 119082751826 |
| Testifying on behalf of pharma & device companies in front of the FDA [Food and Drug Administration]. | Transplantes
> Transplantes: coração e pulmão | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 5.000 | Local | Regularly | 119014633092 |
| Discussions with FDA [Food and Drug Administration]. | Saúde geral
> Comunidades diversas | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 10.000 | International | Rarely | 119026771169 |
| I personally have testified before the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]. | Transplantes
> Transplantes: coração e pulmão | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 1.000 | Regional | Sometimes | 119037216727 |
| We collaborated on an externally-led Patient-Focused Drug Development meeting with the FDA [Food and Drug Administration] in 2025. | Neurológico
> Esclerose múltipla | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/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
> Doenças raras: maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 5.000 | 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. | Câncer
> Câncer: outro | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 100.000 | International | Regularly | 119047535935 |
| Communications with FDA [Food and Drug Administration], participating in public comment sessions. | Sangue
> Anemia | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 5.000 | National | Regularly | 119050770645 |
| We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients. | Fígado
> Doenças hepáticas: maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 100.000 | International | Regularly | 119054948119 |
| Testifying at ODAC [Oncologic Drugs Advisory Committee]. | Câncer
> Câncer: outro | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/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
> Doenças raras: genéticas | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 5.000 | International | Regularly | 119065526277 |
| EL-PFDD [Externally-Led Patient-Focused Drug Development] FDA [Food and Drug Administration] Patient Listening Sessions. | Defesa do paciente
> Ativista de saúde | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/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
> Doenças neuromusculares: maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 100.000 | National | Sometimes | 119068005400 |
| Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration]. | Reumático
> Lúpus | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/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. | Rim
> Doenças renais | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 100.000 | National | Regularly | 119070696943 |
| We provide public comment on new drugs to the FDA [Food and Drug Administration]. | Sangue
> Doença falciforme | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/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
> Doenças raras: maioria dos tipos | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 100.000 | National | Rarely | 119078556821 |
| Coalition work. | Raro
> Doenças raras: direitos dos pacientes | Parceria regulatória
> Com outros defensores da saúde | 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. | Autoimune
> Autoimune: outro | Parceria regulatória
> Com outros defensores da saúde | 100.000 | International | Regularly | 119071535440 |
| In Arizona and, on occasion, more broadly across the USA, we collaborate with other cancer groups, organisations, and legislators. | Câncer
> Câncer: sangue | Parceria regulatória
> Com outros defensores da saúde | Do not know | Regional | Sometimes | 119078394447 |
| Lobbying on the state and federal level on rules/laws that impact our patients. | Saúde geral
> Prestação de serviços de saúde | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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]. | Câncer
> Câncer: outro | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | Neurodegenerativa
> Parkinson's | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100.000 | Regional | Rarely | 119020536956 |
| Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures. | Reumático
> Lúpus | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 5.000 | Regional | Sometimes | 119037794627 |
| Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures. | Reumático
> Lúpus | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 5.000 | 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
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100 | International | Regularly | 119038170136 |
| Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office. | Câncer
> Câncer: pesquisa médica | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 1.000 | National | Rarely | 119044810653 |
| We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients. | Fígado
> Doenças hepáticas: maioria dos tipos | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100.000 | International | Regularly | 119054948119 |
| We frequently engage on state and federal issues related to patient access to care. | Respiratório
> Doenças pulmonares | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100.000 | National | Rarely | 119055217525 |
| We regularly advocate through sign-on letters, policymaker discussions, and policy related programming. | Câncer
> Câncer: comunidades diversas | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 5.000 | 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
> Condições cardiovasculares & cardíacas | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | Over 100,000 | International | Sometimes | 119058234393 |
| Campaigning with KidneyCAN for increased federal research funding. | Câncer
> Câncer: rim | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 1.000 | 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. | Fígado
> Doenças hepáticas: maioria dos tipos | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100.000 | National | Regularly | 119059491202 |
| We communicate with federal representatives about the importance of funding. | Câncer
> Câncer: cérebro | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | We do not communicate with patients directly | National | Sometimes | 119061001133 |
| We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years]. | Defesa do paciente
> Ativista de saúde | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | Rim
> Doenças renais | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | Over 100,000 | National | Regularly | 119068073151 |
| We work with state, federal policymakers and health insurers. | Saúde geral
> Obesidade | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | HIV
> HIV e saúde sexual | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100 | Regional | Regularly | 119073874628 |
| Supported efforts to have an ICD-10 (International Classification of Diseases, 10th Revision) code for VEXAS syndrome. | Raro
> Doenças autoinflamatórias | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 1.000 | 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. | Sangue
> Doença falciforme | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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
> Fibrose cística | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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. | Câncer
> Câncer: sangue | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | Do not know | Regional | Sometimes | 119078394447 |
| We have a policy committee and weigh in on public policy issues through education and advocacy. | Crônico
> Paliativo | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100 | National | Regularly | 119078649119 |
| We include a discussion of medication pricing in our discussions with state and federal government employees. | Neurodegenerativa
> Parkinson's | Impactando políticas e legislação
> Participar de audiências públicas e 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. | Saúde mental
> Saúde mental: estigma | Impactando políticas e legislação
> Participar de audiências públicas e 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
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 100 | International | Regularly | 119038170136 |
| Testify before prescription drug affordability boards. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 1.000 | Local | Regularly | 119044404340 |
| Communications with FDA [Food and Drug Administration], participating in public comment sessions. | Sangue
> Anemia | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 5.000 | National | Regularly | 119050770645 |
| We regularly advocate through sign-on letters, policymaker discussions, and policy related programming. | Câncer
> Câncer: comunidades diversas | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 5.000 | 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
> Condições cardiovasculares & cardíacas | Impactando políticas e legislação
> Participar de audiências públicas e consultas | Over 100,000 | International | Sometimes | 119058234393 |
| ... Testifying at IRA [Inflation Reduction Act] listening sessions to elevate the patient experience. | Câncer
> Câncer: outro | Impactando políticas e legislação
> Participar de audiências públicas e 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. | Fígado
> Doenças hepáticas: maioria dos tipos | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 100.000 | National | Regularly | 119059491202 |
| Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed. | Câncer
> Câncer: sarcoma | Impactando políticas e legislação
> Participar de audiências públicas e 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. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 5.000 | 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. | Rim
> Doenças renais | Impactando políticas e legislação
> Participar de audiências públicas e 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. | Educação do paciente
> Informações do paciente | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 5.000 | 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. | Saúde geral
> Estilo de vida | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 100.000 | National | Sometimes | 119074217249 |
| We provide public comment on new drugs to the FDA [Food and Drug Administration]. | Sangue
> Doença falciforme | Impactando políticas e legislação
> Participar de audiências públicas e 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.]. | Saúde geral
> Prestação de serviços de saúde | Impactando políticas e legislação
> Participar de audiências públicas e consultas | 5.000 | 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
> Fibrose cística | Impactando políticas e legislação
> Participar de audiências públicas e 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
> Doenças raras: maioria dos tipos | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 100 | International | Regularly | 119038170136 |
| Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office. | Câncer
> Câncer: pesquisa médica | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 1.000 | National | Rarely | 119044810653 |
| We communicate with federal representatives about the importance of funding. | Câncer
> Câncer: cérebro | Impactando políticas e legislação
> Mobilizar parlamentares e 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. | Sangue
> Doença falciforme | Impactando políticas e legislação
> Mobilizar parlamentares e 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
> Lúpus | Impactando políticas e legislação
> Mobilizar parlamentares e líderes políticos | 100.000 | National | Regularly | 119082751826 |
| Government Relations/Advocacy team signs letters in support of lower drug prices. | Câncer
> Câncer: próstata | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 100.000 | National | Sometimes | 119011723588 |
| We include a discussion of medication pricing in our discussions with state and federal government employees. | Neurodegenerativa
> Parkinson's | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 100.000 | Regional | Rarely | 119020536956 |
| Testify before prescription drug affordability boards. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 1.000 | Local | Regularly | 119044404340 |
| Drug assistance programs and co-pay assistance foundation. | Câncer
> Câncer: a maioria dos tipos | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 5.000 | 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. | Respiratório
> Doenças pulmonares | Defesa de preços e acessibilidade financeira
> Defenda preços justos para 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 | Fígado
> Doenças hepáticas: maioria dos tipos | Defesa de preços e acessibilidade financeira
> Defenda preços justos para 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]. | Defesa do paciente
> Ativista de saúde | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 10.000 | Regional | Regularly | 119059636045 |
| Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing. | Câncer
> Câncer: cérebro | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 1.000 | 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. | Defesa do paciente
> Treinamento | Defesa de preços e acessibilidade financeira
> Defenda preços justos para 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. | Defesa do paciente
> Ativista de saúde | Defesa de preços e acessibilidade financeira
> Defenda preços justos para 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. | Rim
> Doenças renais | Defesa de preços e acessibilidade financeira
> Defenda preços justos para 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. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 5.000 | 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. | HIV
> HIV e saúde sexual | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 100 | Regional | Regularly | 119073874628 |
| Pharma pricing. | Saúde geral
> Obesidade | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 100.000 | National | Regularly | 119076659022 |
| With our new Public Policy department, this may come up as an opportunity to advocate for drug pricing. | Neurodegenerativa
> Parkinson's | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 100.000 | National | Sometimes | 119078318937 |
| Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years. | Sangue
> Doença falciforme | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | 5.000 | National | Sometimes | 119079213376 |
| We have participated in the IRA [Inflation Reduction Act] price negotiation round tables. | Respiratório
> Asma e alergia | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 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]. | Respiratório
> Asma e alergia | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 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. | Saúde mental
> Saúde mental: estigma | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | We do not communicate with patients directly | National | Sometimes | 119024698241 |
| ... meetings with state office of CMS [Centers for Medicare & Medicaid Services]. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 1.000 | Local | Regularly | 119044404340 |
| Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences. | Raro
> Doenças raras: maioria dos tipos | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 5.000 | 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.] | Câncer
> Câncer: comunidades diversas | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 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. | Fígado
> Doenças hepáticas: maioria dos tipos | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 100.000 | National | Regularly | 119059491202 |
| PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees. | Defesa do paciente
> Ativista de saúde | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | We do not communicate with patients directly | National | Regularly | 119064160791 |
| We participated in the Medicare price negotiation roundtables and town hall last year. | Respiratório
> Asma e alergia | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 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
> Lúpus | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 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. | Autoimune
> Autoimune: outro | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 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. | Educação do paciente
> Informações do paciente | Defesa de preços e acessibilidade financeira
> Participar de negociações com o conselho de revisão de preços | 5.000 | 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. | Neurodegenerativa
> Doença de Huntington | Defesa de preços e acessibilidade financeira
> Abordar barreiras de custo para pessoas de baixa renda e vulneráveis | 100.000 | National | Sometimes | 119017688949 |
| Health insurance companies and health insurance reps organize activities for low income communities. | Pessoas mais velhas
> Pessoas mais velhas | Defesa de preços e acessibilidade financeira
> Abordar barreiras de custo para pessoas de baixa renda e vulneráveis | 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. | HIV
> HIV e saúde sexual | Defesa de preços e acessibilidade financeira
> Abordar barreiras de custo para pessoas de baixa renda e vulneráveis | 100 | Regional | Regularly | 119073874628 |
| We regularly provide comments to state P&T [Pharmacy and Therapeutics] committees regarding their formulary inclusions and exclusions. | Respiratório
> Asma e alergia | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | 100.000 | National | Regularly | 119011501209 |
| PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees. | Defesa do paciente
> Ativista de saúde | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | 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. | Câncer
> Câncer: pesquisa médica | Defesa de preços e acessibilidade financeira
> Participando de campanhas de conscientização | 1.000 | National | Rarely | 119044810653 |
| Advocacy in access to care issues. | Câncer
> Câncer: a maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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]. | Câncer
> Câncer: outro | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Neurodegenerativa
> Parkinson's | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 100.000 | Regional | Rarely | 119020536956 |
| ... We sent letters to States to request that they change their step requirements for access to mental health treatments. | Saúde mental
> Saúde mental: estigma | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Câncer
> Câncer: pesquisa médica | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 1.000 | National | Rarely | 119044810653 |
| Drug assistance programs and co-pay assistance foundation. | Câncer
> Câncer: a maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 5.000 | International | Sometimes | 119045428228 |
| We frequently engage on state and federal issues related to patient access to care. | Respiratório
> Doenças pulmonares | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Fígado
> Doenças hepáticas: maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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
> Enxaqueca/outros distúrbios de cefaleia | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Defesa do paciente
> Treinamento | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 100.000 | International | Regularly | 119063146174 |
| State level Medicaid. | Câncer
> Câncer: a maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 1.000 | 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. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 5.000 | Regional | Regularly | 119069774462 |
| We are currently addressing access to biologic medications. | Raro
> Doenças raras: imune | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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
> Lúpus | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Saúde geral
> Estilo de vida | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 100.000 | National | Sometimes | 119074217249 |
| Pharma pricing, coverage, indications. | Saúde geral
> Obesidade | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 100.000 | National | Regularly | 119076659022 |
| We have on only a few occasions advocated for better access to newer drugs. | Saúde mental
> Saúde mental: estigma | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | Over 100,000 | International | Rarely | 119078209025 |
| Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years. | Sangue
> Doença falciforme | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 5.000 | 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
> Lúpus | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 100.000 | National | Regularly | 119082751826 |
| ... We sent letters to States to request that they change their step requirements for access to mental health treatments. | Saúde mental
> Saúde mental: estigma | Melhorando os caminhos de acesso
> Abordar disparidades no acesso e na gestão | 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. | Sangramento
> Distúrbios hemorrágicos: maioria dos tipos | Melhorando os caminhos de acesso
> Abordar disparidades no acesso e na gestão | 5.000 | 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
> Doenças raras: maioria dos tipos | Melhorando os caminhos de acesso
> Melhorando o acesso a terapias raras/ultrarraras | 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. | Câncer
> Câncer: outro | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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. | Câncer
> Câncer: outro | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 100.000 | International | Regularly | 119047535935 |
| Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting. | Neurodegenerativa
> Demência | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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 | Câncer
> Câncer: mama | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 100.000 | International | Sometimes | 119052475951 |
| We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years]. | Defesa do paciente
> Ativista de saúde | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | Do not know | National | Regularly | 119065430409 |
| Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration]. | Reumático
> Lúpus | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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]. | Rim
> Doenças renais | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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. | HIV
> HIV e saúde sexual | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 100 | Regional | Regularly | 119073874628 |
| We provide data and real-world knowledge. | Fígado
> Doenças hepáticas: maioria dos tipos | Contribuição do paciente baseada em evidências
> Fornecer Evidências do Mundo Real (RWE) a agências regulatórias | 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 | Fígado
> Doenças hepáticas: maioria dos tipos | Contribuição do paciente baseada em evidências
> Fornecer Evidências do Mundo Real (RWE) a agências regulatórias | 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. | HIV
> HIV e saúde sexual | Contribuição do paciente baseada em evidências
> Fornecer Evidências do Mundo Real (RWE) a agências regulatórias | 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. | Neurodegenerativa
> Doença de Huntington | Contribuição do paciente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências 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. | Fígado
> Doenças hepáticas: maioria dos tipos | Contribuição do paciente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências 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
> Enxaqueca/outros distúrbios de cefaleia | Contribuição do paciente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | 100.000 | National | Rarely | 119060019780 |
| Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing. | Câncer
> Câncer: cérebro | Contribuição do paciente baseada em evidências
> Aproveite histórias de pacientes e narrativas de experiências vividas | 1.000 | National | Rarely | 119061176158 |
| Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting. | Neurodegenerativa
> Demência | Contribuição do paciente baseada em evidências
> Realizar pesquisas/investigações para gerar dados | 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 | Câncer
> Câncer: mama | Contribuição do paciente baseada em evidências
> Realizar pesquisas/investigações para gerar dados | 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. | HIV
> HIV e saúde sexual | Contribuição do paciente baseada em evidências
> Traduza evidências e insights em subsídios 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. | Rim
> Doenças renais | Diagnóstico e entrega de medicamentos
> Colaborar no design de ensaios clínicos | 100.000 | National | Regularly | 119070696943 |
| Supporting legislation for multiple cancer early detection, including TV appearances and social media. | Câncer
> Câncer: cuidadores, família, amigos | Diagnóstico e entrega de medicamentos
> Apoiar triagem e detecção precoce | 1.000 | Regional | Regularly | 119036085844 |
| Discussions about review and approvals of new screening technologies. | Câncer
> Câncer: a maioria dos tipos | Diagnóstico e entrega de medicamentos
> Apoiar triagem e detecção precoce | 100.000 | National | Rarely | 119045117950 |
| USPTF [U.S. Preventive Services Task Force] input. | Câncer
> Câncer: masculino | Diagnóstico e entrega de medicamentos
> Apoiar triagem e detecção precoce | 100.000 | National | Sometimes | 119050776275 |
| Sit on several panels. | Câncer
> Câncer: mama | Governança institucional
> Garantir representação em órgãos consultivos governamentais | 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
> Doenças raras: maioria dos tipos | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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 | Câncer
> Câncer: mama | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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. | Saúde geral
> Estilo de vida | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 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
> Lúpus | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 100.000 | National | Regularly | 119082751826 |
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