| Our community members participate in this at an individual level, and as an organisation, we meet with industry policy holders. | 암
> 암: 여성 | 규제 파트너십
> 규제 기관과의 협력 | 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. | 신경학적
> 다발성 경화증 | 규제 파트너십
> 규제 기관과의 협력 | 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. | 환자 권익 옹호
> 훈련 | 규제 파트너십
> 규제 기관과의 협력 | 100,000 | International | Regularly | 119063146174 |
| Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed. | 암
> 암: 육종 | 규제 파트너십
> 규제 기관과의 협력 | 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. | 희귀
> 희귀 질환: 유전성 | 규제 파트너십
> 규제 기관과의 협력 | 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. | 신장
> 신장 질환 | 규제 파트너십
> 규제 기관과의 협력 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 규제 기관과의 협력 | 100,000 | National | Rarely | 119078556821 |
| We have a policy committee and weigh in on public policy issues through education and advocacy. | 만성
> 완화 | 규제 파트너십
> 규제 기관과의 협력 | 100 | National | Regularly | 119078649119 |
| Discussions about review and approvals of new screening technologies. | 암
> 암: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 환자 권익 옹호
> 훈련 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 신장
> 신장 질환 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 100,000 | National | Regularly | 119070696943 |
| Our organization has participated in responses to ICER [Institute for Clinical and Economic Review]. | 호흡기
> 폐 질환 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 100,000 | International | Rarely | 119078556838 |
| We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews. | 류마티스성
> 루푸스 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 100,000 | National | Regularly | 119082751826 |
| Testifying on behalf of pharma & device companies in front of the FDA [Food and Drug Administration]. | 이식
> 이식: 심장 및 폐 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 5,000 | Local | Regularly | 119014633092 |
| Discussions with FDA [Food and Drug Administration]. | 일반 건강
> 다양한 커뮤니티 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 10,000 | International | Rarely | 119026771169 |
| I personally have testified before the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]. | 이식
> 이식: 심장 및 폐 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 신경학적
> 다발성 경화증 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 100,000 | National | Rarely | 119039458452 |
| Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 암
> 암: 기타 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 100,000 | International | Regularly | 119047535935 |
| Communications with FDA [Food and Drug Administration], participating in public comment sessions. | 혈액
> 빈혈 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 간
> 간 질환: 대부분의 유형 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 100,000 | International | Regularly | 119054948119 |
| Testifying at ODAC [Oncologic Drugs Advisory Committee]. | 암
> 암: 기타 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 희귀
> 희귀 질환: 유전성 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 5,000 | International | Regularly | 119065526277 |
| EL-PFDD [Externally-Led Patient-Focused Drug Development] FDA [Food and Drug Administration] Patient Listening Sessions. | 환자 권익 옹호
> 건강 활동가 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 신경근
> 신경근육 질환: 대부분의 유형 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 100,000 | National | Sometimes | 119068005400 |
| Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration]. | 류마티스성
> 루푸스 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 신장
> 신장 질환 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 100,000 | National | Regularly | 119070696943 |
| We provide public comment on new drugs to the FDA [Food and Drug Administration]. | 혈액
> 겸상 적혈구 질환 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 100,000 | National | Rarely | 119078556821 |
| Coalition work. | 희귀
> 희귀 질환: 환자 권리 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 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. | 자가면역
> 자가면역: 기타 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 100,000 | International | Regularly | 119071535440 |
| In Arizona and, on occasion, more broadly across the USA, we collaborate with other cancer groups, organisations, and legislators. | 암
> 암: 혈액 | 규제 파트너십
> 다른 의료 지지자들과 함께 | Do not know | Regional | Sometimes | 119078394447 |
| Lobbying on the state and federal level on rules/laws that impact our patients. | 일반 건강
> 의료 서비스 제공 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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]. | 암
> 암: 기타 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 신경퇴행성
> 파킨슨병 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100,000 | Regional | Rarely | 119020536956 |
| Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures. | 류마티스성
> 루푸스 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 5,000 | Regional | Sometimes | 119037794627 |
| Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures. | 류마티스성
> 루푸스 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100 | International | Regularly | 119038170136 |
| Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office. | 암
> 암: 의학 연구 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 간
> 간 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100,000 | International | Regularly | 119054948119 |
| We frequently engage on state and federal issues related to patient access to care. | 호흡기
> 폐 질환 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100,000 | National | Rarely | 119055217525 |
| We regularly advocate through sign-on letters, policymaker discussions, and policy related programming. | 암
> 암: 다양한 커뮤니티 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 심혈관
> 심혈관 및 심장 질환 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | Over 100,000 | International | Sometimes | 119058234393 |
| Campaigning with KidneyCAN for increased federal research funding. | 암
> 암: 신장 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 간
> 간 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100,000 | National | Regularly | 119059491202 |
| We communicate with federal representatives about the importance of funding. | 암
> 암: 뇌 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | We do not communicate with patients directly | National | Sometimes | 119061001133 |
| We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years]. | 환자 권익 옹호
> 건강 활동가 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 신장
> 신장 질환 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | Over 100,000 | National | Regularly | 119068073151 |
| We work with state, federal policymakers and health insurers. | 일반 건강
> 비만 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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 및 성 건강 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100 | Regional | Regularly | 119073874628 |
| Supported efforts to have an ICD-10 (International Classification of Diseases, 10th Revision) code for VEXAS syndrome. | 희귀
> 자가염증 질환 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 혈액
> 겸상 적혈구 질환 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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]. | 희귀
> 낭포성 섬유증 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 암
> 암: 혈액 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | Do not know | Regional | Sometimes | 119078394447 |
| We have a policy committee and weigh in on public policy issues through education and advocacy. | 만성
> 완화 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100 | National | Regularly | 119078649119 |
| We include a discussion of medication pricing in our discussions with state and federal government employees. | 신경퇴행성
> 파킨슨병 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 정신 건강
> 정신 건강: 낙인 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 100 | International | Regularly | 119038170136 |
| Testify before prescription drug affordability boards. | 출혈
> 출혈 장애: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 1,000 | Local | Regularly | 119044404340 |
| Communications with FDA [Food and Drug Administration], participating in public comment sessions. | 혈액
> 빈혈 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 5,000 | National | Regularly | 119050770645 |
| We regularly advocate through sign-on letters, policymaker discussions, and policy related programming. | 암
> 암: 다양한 커뮤니티 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 심혈관
> 심혈관 및 심장 질환 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | Over 100,000 | International | Sometimes | 119058234393 |
| ... Testifying at IRA [Inflation Reduction Act] listening sessions to elevate the patient experience. | 암
> 암: 기타 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 간
> 간 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 100,000 | National | Regularly | 119059491202 |
| Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed. | 암
> 암: 육종 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 출혈
> 출혈 장애: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 신장
> 신장 질환 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 환자 교육
> 환자 정보 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 일반 건강
> 라이프스타일 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 100,000 | National | Sometimes | 119074217249 |
| We provide public comment on new drugs to the FDA [Food and Drug Administration]. | 혈액
> 겸상 적혈구 질환 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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.]. | 일반 건강
> 의료 서비스 제공 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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]. | 희귀
> 낭포성 섬유증 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 100 | International | Regularly | 119038170136 |
| Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office. | 암
> 암: 의학 연구 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 1,000 | National | Rarely | 119044810653 |
| We communicate with federal representatives about the importance of funding. | 암
> 암: 뇌 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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. | 혈액
> 겸상 적혈구 질환 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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] | 류마티스성
> 루푸스 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 100,000 | National | Regularly | 119082751826 |
| Government Relations/Advocacy team signs letters in support of lower drug prices. | 암
> 암: 전립선 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 100,000 | National | Sometimes | 119011723588 |
| We include a discussion of medication pricing in our discussions with state and federal government employees. | 신경퇴행성
> 파킨슨병 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 100,000 | Regional | Rarely | 119020536956 |
| Testify before prescription drug affordability boards. | 출혈
> 출혈 장애: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 1,000 | Local | Regularly | 119044404340 |
| Drug assistance programs and co-pay assistance foundation. | 암
> 암: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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. | 호흡기
> 폐 질환 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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 | 간
> 간 질환: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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]. | 환자 권익 옹호
> 건강 활동가 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 10,000 | Regional | Regularly | 119059636045 |
| Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing. | 암
> 암: 뇌 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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. | 환자 권익 옹호
> 훈련 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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. | 환자 권익 옹호
> 건강 활동가 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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. | 신장
> 신장 질환 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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. | 출혈
> 출혈 장애: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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 및 성 건강 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 100 | Regional | Regularly | 119073874628 |
| Pharma pricing. | 일반 건강
> 비만 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 100,000 | National | Regularly | 119076659022 |
| With our new Public Policy department, this may come up as an opportunity to advocate for drug pricing. | 신경퇴행성
> 파킨슨병 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 100,000 | National | Sometimes | 119078318937 |
| Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years. | 혈액
> 겸상 적혈구 질환 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 5,000 | National | Sometimes | 119079213376 |
| We have participated in the IRA [Inflation Reduction Act] price negotiation round tables. | 호흡기
> 천식 및 알레르기 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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]. | 호흡기
> 천식 및 알레르기 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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. | 정신 건강
> 정신 건강: 낙인 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | We do not communicate with patients directly | National | Sometimes | 119024698241 |
| ... meetings with state office of CMS [Centers for Medicare & Medicaid Services]. | 출혈
> 출혈 장애: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 1,000 | Local | Regularly | 119044404340 |
| Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences. | 희귀
> 희귀 질환: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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.] | 암
> 암: 다양한 커뮤니티 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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. | 간
> 간 질환: 대부분의 유형 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 100,000 | National | Regularly | 119059491202 |
| PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees. | 환자 권익 옹호
> 건강 활동가 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | We do not communicate with patients directly | National | Regularly | 119064160791 |
| We participated in the Medicare price negotiation roundtables and town hall last year. | 호흡기
> 천식 및 알레르기 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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. | 류마티스성
> 루푸스 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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. | 자가면역
> 자가면역: 기타 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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. | 환자 교육
> 환자 정보 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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. | 신경퇴행성
> 헌팅턴병 | 가격 책정 및 affordability 옹호
> 저소득층 및 취약계층의 비용 장벽 해소 | 100,000 | National | Sometimes | 119017688949 |
| Health insurance companies and health insurance reps organize activities for low income communities. | 노인
> 노인 | 가격 책정 및 affordability 옹호
> 저소득층 및 취약계층의 비용 장벽 해소 | 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 및 성 건강 | 가격 책정 및 affordability 옹호
> 저소득층 및 취약계층의 비용 장벽 해소 | 100 | Regional | Regularly | 119073874628 |
| We regularly provide comments to state P&T [Pharmacy and Therapeutics] committees regarding their formulary inclusions and exclusions. | 호흡기
> 천식 및 알레르기 | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | 100,000 | National | Regularly | 119011501209 |
| PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees. | 환자 권익 옹호
> 건강 활동가 | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | 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. | 암
> 암: 의학 연구 | 가격 책정 및 affordability 옹호
> 인식 제고 캠페인 참여 | 1,000 | National | Rarely | 119044810653 |
| Advocacy in access to care issues. | 암
> 암: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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]. | 암
> 암: 기타 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 신경퇴행성
> 파킨슨병 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 100,000 | Regional | Rarely | 119020536956 |
| ... We sent letters to States to request that they change their step requirements for access to mental health treatments. | 정신 건강
> 정신 건강: 낙인 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 암
> 암: 의학 연구 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 1,000 | National | Rarely | 119044810653 |
| Drug assistance programs and co-pay assistance foundation. | 암
> 암: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 5,000 | International | Sometimes | 119045428228 |
| We frequently engage on state and federal issues related to patient access to care. | 호흡기
> 폐 질환 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 간
> 간 질환: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 100,000 | National | Regularly | 119059491202 |
| We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug. | 신경학적
> 편두통/기타 두통 장애 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 환자 권익 옹호
> 훈련 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 100,000 | International | Regularly | 119063146174 |
| State level Medicaid. | 암
> 암: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 출혈
> 출혈 장애: 대부분의 유형 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 5,000 | Regional | Regularly | 119069774462 |
| We are currently addressing access to biologic medications. | 희귀
> 희귀 질환: 면역 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 류마티스성
> 루푸스 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 일반 건강
> 라이프스타일 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 100,000 | National | Sometimes | 119074217249 |
| Pharma pricing, coverage, indications. | 일반 건강
> 비만 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 100,000 | National | Regularly | 119076659022 |
| We have on only a few occasions advocated for better access to newer drugs. | 정신 건강
> 정신 건강: 낙인 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | Over 100,000 | International | Rarely | 119078209025 |
| Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years. | 혈액
> 겸상 적혈구 질환 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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.] | 류마티스성
> 루푸스 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 100,000 | National | Regularly | 119082751826 |
| ... We sent letters to States to request that they change their step requirements for access to mental health treatments. | 정신 건강
> 정신 건강: 낙인 | 접근 경로 개선
> 접근성 및 관리의 불균형 해소 | 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. | 출혈
> 출혈 장애: 대부분의 유형 | 접근 경로 개선
> 접근성 및 관리의 불균형 해소 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 접근 경로 개선
> 희귀/초희귀 치료제 접근성 개선 | 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. | 암
> 암: 기타 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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. | 암
> 암: 기타 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 100,000 | International | Regularly | 119047535935 |
| Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting. | 신경퇴행성
> 치매 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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 | 암
> 암: 유방 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 100,000 | International | Sometimes | 119052475951 |
| We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years]. | 환자 권익 옹호
> 건강 활동가 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | Do not know | National | Regularly | 119065430409 |
| Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration]. | 류마티스성
> 루푸스 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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]. | 신장
> 신장 질환 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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 및 성 건강 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 100 | Regional | Regularly | 119073874628 |
| We provide data and real-world knowledge. | 간
> 간 질환: 대부분의 유형 | 근거 기반 환자 의견
> 규제 기관에 실제 근거(RWE) 제공 | 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 | 간
> 간 질환: 대부분의 유형 | 근거 기반 환자 의견
> 규제 기관에 실제 근거(RWE) 제공 | 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 및 성 건강 | 근거 기반 환자 의견
> 규제 기관에 실제 근거(RWE) 제공 | 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. | 신경퇴행성
> 헌팅턴병 | 근거 기반 환자 의견
> 환자 이야기와 실제 경험 서사 활용 | 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. | 간
> 간 질환: 대부분의 유형 | 근거 기반 환자 의견
> 환자 이야기와 실제 경험 서사 활용 | 100,000 | National | Regularly | 119059491202 |
| We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug. | 신경학적
> 편두통/기타 두통 장애 | 근거 기반 환자 의견
> 환자 이야기와 실제 경험 서사 활용 | 100,000 | National | Rarely | 119060019780 |
| Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing. | 암
> 암: 뇌 | 근거 기반 환자 의견
> 환자 이야기와 실제 경험 서사 활용 | 1,000 | National | Rarely | 119061176158 |
| Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting. | 신경퇴행성
> 치매 | 근거 기반 환자 의견
> 데이터 생성을 위한 설문조사/연구 수행 | 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 | 암
> 암: 유방 | 근거 기반 환자 의견
> 데이터 생성을 위한 설문조사/연구 수행 | 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 및 성 건강 | 근거 기반 환자 의견
> 증거와 인사이트를 정책 입력으로 전환 | 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. | 신장
> 신장 질환 | 진단 및 의약품 배달
> 임상 시험 설계에 대해 협력하기 | 100,000 | National | Regularly | 119070696943 |
| Supporting legislation for multiple cancer early detection, including TV appearances and social media. | 암
> 암: 간병인, 가족, 친구 | 진단 및 의약품 배달
> 검진 및 조기 발견 지원 | 1,000 | Regional | Regularly | 119036085844 |
| Discussions about review and approvals of new screening technologies. | 암
> 암: 대부분의 유형 | 진단 및 의약품 배달
> 검진 및 조기 발견 지원 | 100,000 | National | Rarely | 119045117950 |
| USPTF [U.S. Preventive Services Task Force] input. | 암
> 암: 남성용 | 진단 및 의약품 배달
> 검진 및 조기 발견 지원 | 100,000 | National | Sometimes | 119050776275 |
| Sit on several panels. | 암
> 암: 유방 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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 | 암
> 암: 유방 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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. | 일반 건강
> 라이프스타일 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 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.] | 류마티스성
> 루푸스 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 100,000 | National | Regularly | 119082751826 |
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