PatientView | Stati Uniti approfondimenti dai Gruppi di Pazienti: Un posto al tavolo dei prezzi

Obiettivi del gruppo di pazienti

Le percentuali seguenti evidenziano come i 91 gruppi di pazienti interagiscono con le autorità regolatorie e si fanno portavoce degli interessi dei pazienti. Poiché i partecipanti possono essere rappresentati in più di un'area, le percentuali potrebbero non totalizzare il 100%.

interazioni

Come i gruppi di pazienti interagiscono con le autorità regolatorie dei farmaci

Scopri cosa significano gli obiettivi

32 menzioni

17 menzioni

15 menzioni

11 menzioni

5 menzioni

1 menzione

azioni e advocacy

Come i gruppi di pazienti ottengono l'accesso ai medicinali

Scopri cosa significano gli obiettivi

27 menzioni

22 menzioni

3 menzioni

2 menzioni

Testo in inglese	Area terapeutica	Categoria	Pazienti raggiunti	Copertura geografica	Coinvolgimento normativo	Rispondente
Our community members participate in this at an individual level, and as an organisation, we meet with industry policy holders.	Cancro > Cancro: donne	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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.	Neurologico > Sclerosi multipla	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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.	Difesa del paziente > Formazione	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	100.000	International	Regularly	119063146174
Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed.	Cancro > Cancro: sarcoma	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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 > Malattie rare: genetiche	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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.	Rene > Malattie renali	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	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 > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	100.000	National	Rarely	119078556821
We have a policy committee and weigh in on public policy issues through education and advocacy.	Cronico > Palliativo	Partenariato normativo > Collaborazione con gli organismi di regolamentazione	100	National	Regularly	119078649119
Discussions about review and approvals of new screening technologies.	Cancro > Cancro: la maggior parte dei tipi	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Difesa del paziente > Formazione	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	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.	Rene > Malattie renali	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	100.000	National	Regularly	119070696943
Our organization has participated in responses to ICER [Institute for Clinical and Economic Review].	Respiratorio > Malattie polmonari	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	100.000	International	Rarely	119078556838
We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews.	Reumatico > Lupus	Partenariato normativo > Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi	100.000	National	Regularly	119082751826
Testifying on behalf of pharma & device companies in front of the FDA [Food and Drug Administration].	Trapianti > Trapianti: cuore e polmone	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	5000	Local	Regularly	119014633092
Discussions with FDA [Food and Drug Administration].	Salute generale > Comunità diverse	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	10.000	International	Rarely	119026771169
I personally have testified before the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services].	Trapianti > Trapianti: cuore e polmone	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	1000	Regional	Sometimes	119037216727
We collaborated on an externally-led Patient-Focused Drug Development meeting with the FDA [Food and Drug Administration] in 2025.	Neurologico > Sclerosi multipla	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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 > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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.	Cancro > Cancro: altro	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	100.000	International	Regularly	119047535935
Communications with FDA [Food and Drug Administration], participating in public comment sessions.	Sangue > Anemia	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	5000	National	Regularly	119050770645
We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients.	Fegato > Malattie del fegato: la maggior parte dei tipi	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	100.000	International	Regularly	119054948119
Testifying at ODAC [Oncologic Drugs Advisory Committee].	Cancro > Cancro: altro	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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 > Malattie rare: genetiche	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	5000	International	Regularly	119065526277
EL-PFDD [Externally-Led Patient-Focused Drug Development] FDA [Food and Drug Administration] Patient Listening Sessions.	Difesa del paziente > Attivista per la salute	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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.	Neuromuscolare > Malattie neuromuscolari: la maggior parte dei tipi	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	100.000	National	Sometimes	119068005400
Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration].	Reumatico > Lupus	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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.	Rene > Malattie renali	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	100.000	National	Regularly	119070696943
We provide public comment on new drugs to the FDA [Food and Drug Administration].	Sangue > Malattia falciforme	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	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 > Malattie rare: la maggior parte dei tipi	Partenariato normativo > Partecipare/facilitare riunioni con responsabili politici/regolatori	100.000	National	Rarely	119078556821
Coalition work.	Raro > Malattie rare: diritti dei pazienti	Partenariato normativo > Con altri sostenitori della salute	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.	Autoimmune > Autoimmune: altro	Partenariato normativo > Con altri sostenitori della salute	100.000	International	Regularly	119071535440
In Arizona and, on occasion, more broadly across the USA, we collaborate with other cancer groups, organisations, and legislators.	Cancro > Cancro: sangue	Partenariato normativo > Con altri sostenitori della salute	Do not know	Regional	Sometimes	119078394447
Lobbying on the state and federal level on rules/laws that impact our patients.	Salute generale > Erogazione dell'assistenza sanitaria	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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].	Cancro > Cancro: altro	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	100.000	Regional	Rarely	119020536956
Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures.	Reumatico > Lupus	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	5000	Regional	Sometimes	119037794627
Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures.	Reumatico > Lupus	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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 > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	100	International	Regularly	119038170136
Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office.	Cancro > Cancro: ricerca medica	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	1000	National	Rarely	119044810653
We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients.	Fegato > Malattie del fegato: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	100.000	International	Regularly	119054948119
We frequently engage on state and federal issues related to patient access to care.	Respiratorio > Malattie polmonari	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	100.000	National	Rarely	119055217525
We regularly advocate through sign-on letters, policymaker discussions, and policy related programming.	Cancro > Cancro: comunità diverse	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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.	Cardiovascolare > Condizioni cardiovascolari e cardiache	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	Over 100,000	International	Sometimes	119058234393
Campaigning with KidneyCAN for increased federal research funding.	Cancro > Cancro: rene	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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.	Fegato > Malattie del fegato: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	100.000	National	Regularly	119059491202
We communicate with federal representatives about the importance of funding.	Cancro > Cancro: cervello	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	We do not communicate with patients directly	National	Sometimes	119061001133
We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years].	Difesa del paziente > Attivista per la salute	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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.	Rene > Malattie renali	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	Over 100,000	National	Regularly	119068073151
We work with state, federal policymakers and health insurers.	Salute generale > Obesità	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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 salute sessuale	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	100	Regional	Regularly	119073874628
Supported efforts to have an ICD-10 (International Classification of Diseases, 10th Revision) code for VEXAS syndrome.	Raro > Malattie autoinfiammatorie	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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.	Sangue > Malattia falciforme	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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 > Fibrosi cistica	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	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.	Cancro > Cancro: sangue	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	Do not know	Regional	Sometimes	119078394447
We have a policy committee and weigh in on public policy issues through education and advocacy.	Cronico > Palliativo	Influenzare le politiche e la legislazione > Influenzare le politiche sanitarie e la legislazione	100	National	Regularly	119078649119
We include a discussion of medication pricing in our discussions with state and federal government employees.	Neurodegenerativo > Parkinson	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Salute mentale > Salute mentale: stigma	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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 > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	100	International	Regularly	119038170136
Testify before prescription drug affordability boards.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	1000	Local	Regularly	119044404340
Communications with FDA [Food and Drug Administration], participating in public comment sessions.	Sangue > Anemia	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	5000	National	Regularly	119050770645
We regularly advocate through sign-on letters, policymaker discussions, and policy related programming.	Cancro > Cancro: comunità diverse	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Cardiovascolare > Condizioni cardiovascolari e cardiache	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	Over 100,000	International	Sometimes	119058234393
... Testifying at IRA [Inflation Reduction Act] listening sessions to elevate the patient experience.	Cancro > Cancro: altro	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Fegato > Malattie del fegato: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	100.000	National	Regularly	119059491202
Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed.	Cancro > Cancro: sarcoma	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Rene > Malattie renali	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Educazione del paziente > Informazioni sul paziente	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.	Salute generale > Stile di vita	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	100.000	National	Sometimes	119074217249
We provide public comment on new drugs to the FDA [Food and Drug Administration].	Sangue > Malattia falciforme	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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.].	Salute generale > Erogazione dell'assistenza sanitaria	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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 > Fibrosi cistica	Influenzare le politiche e la legislazione > Partecipa alle audizioni pubbliche e alle consultazioni	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 > Malattie rare: la maggior parte dei tipi	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	100	International	Regularly	119038170136
Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office.	Cancro > Cancro: ricerca medica	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	1000	National	Rarely	119044810653
We communicate with federal representatives about the importance of funding.	Cancro > Cancro: cervello	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	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 > Malattia falciforme	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	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]	Reumatico > Lupus	Influenzare le politiche e la legislazione > Mobilitare parlamentari e leader politici	100.000	National	Regularly	119082751826
Government Relations/Advocacy team signs letters in support of lower drug prices.	Cancro > Cancro: prostata	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	100.000	National	Sometimes	119011723588
We include a discussion of medication pricing in our discussions with state and federal government employees.	Neurodegenerativo > Parkinson	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	100.000	Regional	Rarely	119020536956
Testify before prescription drug affordability boards.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	1000	Local	Regularly	119044404340
Drug assistance programs and co-pay assistance foundation.	Cancro > Cancro: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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 > Malattie polmonari	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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	Fegato > Malattie del fegato: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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].	Difesa del paziente > Attivista per la salute	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	10.000	Regional	Regularly	119059636045
Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing.	Cancro > Cancro: cervello	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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.	Difesa del paziente > Formazione	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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.	Difesa del paziente > Attivista per la salute	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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.	Rene > Malattie renali	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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.	HIV > HIV e salute sessuale	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	100	Regional	Regularly	119073874628
Pharma pricing.	Salute generale > Obesità	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	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	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	100.000	National	Sometimes	119078318937
Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years.	Sangue > Malattia falciforme	Advocacy per prezzi e accessibilità economica > Sostenere prezzi equi dei farmaci	5000	National	Sometimes	119079213376
We have participated in the IRA [Inflation Reduction Act] price negotiation round tables.	Respiratorio > Asma e allergia	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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 e allergia	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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.	Salute mentale > Salute mentale: stigma	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	We do not communicate with patients directly	National	Sometimes	119024698241
... meetings with state office of CMS [Centers for Medicare & Medicaid Services].	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	1000	Local	Regularly	119044404340
Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences.	Raro > Malattie rare: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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.]	Cancro > Cancro: comunità diverse	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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.	Fegato > Malattie del fegato: la maggior parte dei tipi	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	100.000	National	Regularly	119059491202
PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees.	Difesa del paziente > Attivista per la salute	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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 e allergia	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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.	Reumatico > Lupus	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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.	Autoimmune > Autoimmune: altro	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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.	Educazione del paziente > Informazioni sul paziente	Advocacy per prezzi e accessibilità economica > Partecipare alle negoziazioni del comitato di revisione dei prezzi	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 > Malattia di Huntington	Advocacy per prezzi e accessibilità economica > Affrontare le barriere di costo per le persone a basso reddito e vulnerabili	100.000	National	Sometimes	119017688949
Health insurance companies and health insurance reps organize activities for low income communities.	Persone anziane > Persone anziane	Advocacy per prezzi e accessibilità economica > Affrontare le barriere di costo per le persone a basso reddito e vulnerabili	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 salute sessuale	Advocacy per prezzi e accessibilità economica > Affrontare le barriere di costo per le persone a basso reddito e vulnerabili	100	Regional	Regularly	119073874628
We regularly provide comments to state P&T [Pharmacy and Therapeutics] committees regarding their formulary inclusions and exclusions.	Respiratorio > Asma e allergia	Advocacy per prezzi e accessibilità economica > Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali	100.000	National	Regularly	119011501209
PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees.	Difesa del paziente > Attivista per la salute	Advocacy per prezzi e accessibilità economica > Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali	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.	Cancro > Cancro: ricerca medica	Advocacy per prezzi e accessibilità economica > Partecipare a campagne di sensibilizzazione	1000	National	Rarely	119044810653
Advocacy in access to care issues.	Cancro > Cancro: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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].	Cancro > Cancro: altro	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Salute mentale > Salute mentale: stigma	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Cancro > Cancro: ricerca medica	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	1000	National	Rarely	119044810653
Drug assistance programs and co-pay assistance foundation.	Cancro > Cancro: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	5000	International	Sometimes	119045428228
We frequently engage on state and federal issues related to patient access to care.	Respiratorio > Malattie polmonari	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Fegato > Malattie del fegato: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Neurologico > Emicrania/altri disturbi del mal di testa	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Difesa del paziente > Formazione	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	100.000	International	Regularly	119063146174
State level Medicaid.	Cancro > Cancro: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	5000	Regional	Regularly	119069774462
We are currently addressing access to biologic medications.	Raro > Malattie rare: immunitarie	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Reumatico > Lupus	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Salute generale > Stile di vita	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	100.000	National	Sometimes	119074217249
Pharma pricing, coverage, indications.	Salute generale > Obesità	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	100.000	National	Regularly	119076659022
We have on only a few occasions advocated for better access to newer drugs.	Salute mentale > Salute mentale: stigma	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria	Over 100,000	International	Rarely	119078209025
Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years.	Sangue > Malattia falciforme	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.]	Reumatico > Lupus	Miglioramento dei percorsi di accesso > Facilitare l'accesso equo ai medicinali/all'assistenza 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.	Salute mentale > Salute mentale: stigma	Miglioramento dei percorsi di accesso > Affrontare le disparità nell'accesso e nella gestione	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.	Sanguinamento > Disturbi emorragici: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Affrontare le disparità nell'accesso e nella gestione	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 > Malattie rare: la maggior parte dei tipi	Miglioramento dei percorsi di accesso > Miglioramento dell'accesso alle terapie rare/ultra-rare	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.	Cancro > Cancro: altro	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	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.	Cancro > Cancro: altro	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	100.000	International	Regularly	119047535935
Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting.	Neurodegenerativo > Demenza	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	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	Cancro > Cancro: seno	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	100.000	International	Sometimes	119052475951
We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years].	Difesa del paziente > Attivista per la salute	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	Do not know	National	Regularly	119065430409
Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration].	Reumatico > Lupus	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	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].	Rene > Malattie renali	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	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 salute sessuale	Contributo del paziente basato sull'evidenza > Utilizza le informazioni sui pazienti per prendere decisioni informate	100	Regional	Regularly	119073874628
We provide data and real-world knowledge.	Fegato > Malattie del fegato: la maggior parte dei tipi	Contributo del paziente basato sull'evidenza > Fornire prove del mondo reale (RWE) alle agenzie regolatorie	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	Fegato > Malattie del fegato: la maggior parte dei tipi	Contributo del paziente basato sull'evidenza > Fornire prove del mondo reale (RWE) alle agenzie regolatorie	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 salute sessuale	Contributo del paziente basato sull'evidenza > Fornire prove del mondo reale (RWE) alle agenzie regolatorie	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 > Malattia di Huntington	Contributo del paziente basato sull'evidenza > Sfrutta le storie dei pazienti e le narrazioni basate sull'esperienza vissuta	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.	Fegato > Malattie del fegato: la maggior parte dei tipi	Contributo del paziente basato sull'evidenza > Sfrutta le storie dei pazienti e le narrazioni basate sull'esperienza vissuta	100.000	National	Regularly	119059491202
We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug.	Neurologico > Emicrania/altri disturbi del mal di testa	Contributo del paziente basato sull'evidenza > Sfrutta le storie dei pazienti e le narrazioni basate sull'esperienza vissuta	100.000	National	Rarely	119060019780
Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing.	Cancro > Cancro: cervello	Contributo del paziente basato sull'evidenza > Sfrutta le storie dei pazienti e le narrazioni basate sull'esperienza vissuta	1000	National	Rarely	119061176158
Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting.	Neurodegenerativo > Demenza	Contributo del paziente basato sull'evidenza > Condurre sondaggi/ricerche per generare dati	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	Cancro > Cancro: seno	Contributo del paziente basato sull'evidenza > Condurre sondaggi/ricerche per generare dati	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 salute sessuale	Contributo del paziente basato sull'evidenza > Tradurre prove e approfondimenti in contributi politici	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.	Rene > Malattie renali	Diagnosi e consegna dei medicinali > Collaborare alla progettazione di studi clinici	100.000	National	Regularly	119070696943
Supporting legislation for multiple cancer early detection, including TV appearances and social media.	Cancro > Cancro: assistenti, familiari, amici	Diagnosi e consegna dei medicinali > Supporto allo screening e alla diagnosi precoce	1000	Regional	Regularly	119036085844
Discussions about review and approvals of new screening technologies.	Cancro > Cancro: la maggior parte dei tipi	Diagnosi e consegna dei medicinali > Supporto allo screening e alla diagnosi precoce	100.000	National	Rarely	119045117950
USPTF [U.S. Preventive Services Task Force] input.	Cancro > Cancro: uomini	Diagnosi e consegna dei medicinali > Supporto allo screening e alla diagnosi precoce	100.000	National	Sometimes	119050776275
Sit on several panels.	Cancro > Cancro: seno	Governance istituzionale > Garantire la rappresentanza negli organi consultivi governativi	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 > Malattie rare: la maggior parte dei tipi	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	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	Cancro > Cancro: seno	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	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.	Salute generale > Stile di vita	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	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.]	Reumatico > Lupus	Governance istituzionale > Lavorare efficacemente all'interno di reti multi-stakeholder	100.000	National	Regularly	119082751826

Stati Uniti

Approfondimenti sul sondaggio

Voci dei gruppi di pazienti

Obiettivi del gruppo di pazienti

Come i gruppi di pazienti interagiscono con le autorità regolatorie dei farmaci

Come i gruppi di pazienti ottengono l'accesso ai medicinali

Accedi ai risultati completi

Scarica report di esempio