| Our community members participate in this at an individual level, and as an organisation, we meet with industry policy holders. | がん
> がん：女性の | 規制上のパートナーシップ
> 規制機関との連携 | 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. | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 規制機関との連携 | 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. | 患者擁護
> トレーニング | 規制上のパートナーシップ
> 規制機関との連携 | 100,000 | International | Regularly | 119063146174 |
| Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed. | がん
> がん：肉腫 | 規制上のパートナーシップ
> 規制機関との連携 | 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. | レア
> まれな疾患：遺伝性 | 規制上のパートナーシップ
> 規制機関との連携 | 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. | 腎臓
> 腎臓病 | 規制上のパートナーシップ
> 規制機関との連携 | 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. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 規制機関との連携 | 100,000 | National | Rarely | 119078556821 |
| We have a policy committee and weigh in on public policy issues through education and advocacy. | 慢性
> 緩和ケア | 規制上のパートナーシップ
> 規制機関との連携 | 100 | National | Regularly | 119078649119 |
| Discussions about review and approvals of new screening technologies. | がん
> がん：ほとんどの種類 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 患者擁護
> トレーニング | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 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. | 腎臓
> 腎臓病 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 100,000 | National | Regularly | 119070696943 |
| Our organization has participated in responses to ICER [Institute for Clinical and Economic Review]. | 呼吸器
> 肺疾患 | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 100,000 | International | Rarely | 119078556838 |
| We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews. | リウマチ性
> 全身性エリテマトーデス | 規制上のパートナーシップ
> 医療技術評価（HTA）および償還審査への参加 | 100,000 | National | Regularly | 119082751826 |
| Testifying on behalf of pharma & device companies in front of the FDA [Food and Drug Administration]. | 移植
> 移植：心臓と肺 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 5,000 | Local | Regularly | 119014633092 |
| Discussions with FDA [Food and Drug Administration]. | 全般的な健康状態
> 多様なコミュニティ | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 10,000 | International | Rarely | 119026771169 |
| I personally have testified before the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]. | 移植
> 移植：心臓と肺 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 神経学的
> 多発性硬化症 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 100,000 | National | Rarely | 119039458452 |
| Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | がん
> がん：その他 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 100,000 | International | Regularly | 119047535935 |
| Communications with FDA [Food and Drug Administration], participating in public comment sessions. | 血液
> 貧血 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 肝臓
> 肝疾患：ほとんどの種類 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 100,000 | International | Regularly | 119054948119 |
| Testifying at ODAC [Oncologic Drugs Advisory Committee]. | がん
> がん：その他 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | レア
> まれな疾患：遺伝性 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 5,000 | International | Regularly | 119065526277 |
| EL-PFDD [Externally-Led Patient-Focused Drug Development] FDA [Food and Drug Administration] Patient Listening Sessions. | 患者擁護
> 健康活動家 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 神経筋
> 神経筋疾患：ほとんどのタイプ | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 100,000 | National | Sometimes | 119068005400 |
| Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration]. | リウマチ性
> 全身性エリテマトーデス | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | 腎臓
> 腎臓病 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 100,000 | National | Regularly | 119070696943 |
| We provide public comment on new drugs to the FDA [Food and Drug Administration]. | 血液
> 鎌状赤血球症 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 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. | レア
> 希少疾患：ほとんどの種類 | 規制上のパートナーシップ
> 政策立案者・規制当局との会議への出席・ファシリテーション | 100,000 | National | Rarely | 119078556821 |
| Coalition work. | レア
> 希少疾患：患者の権利 | 規制上のパートナーシップ
> 他の医療擁護者と | 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. | 自己免疫
> 自己免疫：その他 | 規制上のパートナーシップ
> 他の医療擁護者と | 100,000 | International | Regularly | 119071535440 |
| In Arizona and, on occasion, more broadly across the USA, we collaborate with other cancer groups, organisations, and legislators. | がん
> がん：血液 | 規制上のパートナーシップ
> 他の医療擁護者と | Do not know | Regional | Sometimes | 119078394447 |
| Lobbying on the state and federal level on rules/laws that impact our patients. | 全般的な健康状態
> 医療提供 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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]. | がん
> がん：その他 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 神経変性
> パーキンソン病 | 政策と法律への影響
> 医療政策と法律に影響を与える | 100,000 | Regional | Rarely | 119020536956 |
| Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures. | リウマチ性
> 全身性エリテマトーデス | 政策と法律への影響
> 医療政策と法律に影響を与える | 5,000 | Regional | Sometimes | 119037794627 |
| Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures. | リウマチ性
> 全身性エリテマトーデス | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 医療政策と法律に影響を与える | 100 | International | Regularly | 119038170136 |
| Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office. | がん
> がん：医学研究 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 肝臓
> 肝疾患：ほとんどの種類 | 政策と法律への影響
> 医療政策と法律に影響を与える | 100,000 | International | Regularly | 119054948119 |
| We frequently engage on state and federal issues related to patient access to care. | 呼吸器
> 肺疾患 | 政策と法律への影響
> 医療政策と法律に影響を与える | 100,000 | National | Rarely | 119055217525 |
| We regularly advocate through sign-on letters, policymaker discussions, and policy related programming. | がん
> がん：多様なコミュニティ | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 心臓血管
> 心臓・循環器系の疾患 | 政策と法律への影響
> 医療政策と法律に影響を与える | Over 100,000 | International | Sometimes | 119058234393 |
| Campaigning with KidneyCAN for increased federal research funding. | がん
> がん：腎臓 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 肝臓
> 肝疾患：ほとんどの種類 | 政策と法律への影響
> 医療政策と法律に影響を与える | 100,000 | National | Regularly | 119059491202 |
| We communicate with federal representatives about the importance of funding. | がん
> がん：脳 | 政策と法律への影響
> 医療政策と法律に影響を与える | We do not communicate with patients directly | National | Sometimes | 119061001133 |
| We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years]. | 患者擁護
> 健康活動家 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 腎臓
> 腎臓病 | 政策と法律への影響
> 医療政策と法律に影響を与える | Over 100,000 | National | Regularly | 119068073151 |
| We work with state, federal policymakers and health insurers. | 全般的な健康状態
> 肥満 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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と性の健康 | 政策と法律への影響
> 医療政策と法律に影響を与える | 100 | Regional | Regularly | 119073874628 |
| Supported efforts to have an ICD-10 (International Classification of Diseases, 10th Revision) code for VEXAS syndrome. | レア
> 自己炎症性疾患 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | 血液
> 鎌状赤血球症 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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]. | レア
> 嚢胞性線維症 | 政策と法律への影響
> 医療政策と法律に影響を与える | 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. | がん
> がん：血液 | 政策と法律への影響
> 医療政策と法律に影響を与える | Do not know | Regional | Sometimes | 119078394447 |
| We have a policy committee and weigh in on public policy issues through education and advocacy. | 慢性
> 緩和ケア | 政策と法律への影響
> 医療政策と法律に影響を与える | 100 | National | Regularly | 119078649119 |
| We include a discussion of medication pricing in our discussions with state and federal government employees. | 神経変性
> パーキンソン病 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | メンタルヘルス
> メンタルヘルス：スティグマ | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 100 | International | Regularly | 119038170136 |
| Testify before prescription drug affordability boards. | 出血
> 出血性疾患：ほとんどの種類 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 1,000 | Local | Regularly | 119044404340 |
| Communications with FDA [Food and Drug Administration], participating in public comment sessions. | 血液
> 貧血 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 5,000 | National | Regularly | 119050770645 |
| We regularly advocate through sign-on letters, policymaker discussions, and policy related programming. | がん
> がん：多様なコミュニティ | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 心臓血管
> 心臓・循環器系の疾患 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | Over 100,000 | International | Sometimes | 119058234393 |
| ... Testifying at IRA [Inflation Reduction Act] listening sessions to elevate the patient experience. | がん
> がん：その他 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 肝臓
> 肝疾患：ほとんどの種類 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 100,000 | National | Regularly | 119059491202 |
| Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed. | がん
> がん：肉腫 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 出血
> 出血性疾患：ほとんどの種類 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 腎臓
> 腎臓病 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 患者教育
> 患者情報 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | 全般的な健康状態
> ライフスタイル | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 100,000 | National | Sometimes | 119074217249 |
| We provide public comment on new drugs to the FDA [Food and Drug Administration]. | 血液
> 鎌状赤血球症 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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.]. | 全般的な健康状態
> 医療提供 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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]. | レア
> 嚢胞性線維症 | 政策と法律への影響
> 公聴会やパブリックコンサルテーションに参加する | 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. | レア
> 希少疾患：ほとんどの種類 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 100 | International | Regularly | 119038170136 |
| Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office. | がん
> がん：医学研究 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 1,000 | National | Rarely | 119044810653 |
| We communicate with federal representatives about the importance of funding. | がん
> がん：脳 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 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. | 血液
> 鎌状赤血球症 | 政策と法律への影響
> 国会議員や政治指導者を動員する | 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] | リウマチ性
> 全身性エリテマトーデス | 政策と法律への影響
> 国会議員や政治指導者を動員する | 100,000 | National | Regularly | 119082751826 |
| Government Relations/Advocacy team signs letters in support of lower drug prices. | がん
> がん：前立腺 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 100,000 | National | Sometimes | 119011723588 |
| We include a discussion of medication pricing in our discussions with state and federal government employees. | 神経変性
> パーキンソン病 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 100,000 | Regional | Rarely | 119020536956 |
| Testify before prescription drug affordability boards. | 出血
> 出血性疾患：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 1,000 | Local | Regularly | 119044404340 |
| Drug assistance programs and co-pay assistance foundation. | がん
> がん：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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. | 呼吸器
> 肺疾患 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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 | 肝臓
> 肝疾患：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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]. | 患者擁護
> 健康活動家 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 10,000 | Regional | Regularly | 119059636045 |
| Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing. | がん
> がん：脳 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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. | 患者擁護
> トレーニング | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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. | 患者擁護
> 健康活動家 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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. | 腎臓
> 腎臓病 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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. | 出血
> 出血性疾患：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 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と性の健康 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 100 | Regional | Regularly | 119073874628 |
| Pharma pricing. | 全般的な健康状態
> 肥満 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 100,000 | National | Regularly | 119076659022 |
| With our new Public Policy department, this may come up as an opportunity to advocate for drug pricing. | 神経変性
> パーキンソン病 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 100,000 | National | Sometimes | 119078318937 |
| Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years. | 血液
> 鎌状赤血球症 | 価格設定と手頃な価格の擁護
> 公正な医薬品価格の実現を推進する | 5,000 | National | Sometimes | 119079213376 |
| We have participated in the IRA [Inflation Reduction Act] price negotiation round tables. | 呼吸器
> 喘息とアレルギー | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 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]. | 呼吸器
> 喘息とアレルギー | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 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. | メンタルヘルス
> メンタルヘルス：スティグマ | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | We do not communicate with patients directly | National | Sometimes | 119024698241 |
| ... meetings with state office of CMS [Centers for Medicare & Medicaid Services]. | 出血
> 出血性疾患：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 1,000 | Local | Regularly | 119044404340 |
| Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences. | レア
> 希少疾患：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 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.] | がん
> がん：多様なコミュニティ | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 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. | 肝臓
> 肝疾患：ほとんどの種類 | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 100,000 | National | Regularly | 119059491202 |
| PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees. | 患者擁護
> 健康活動家 | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | We do not communicate with patients directly | National | Regularly | 119064160791 |
| We participated in the Medicare price negotiation roundtables and town hall last year. | 呼吸器
> 喘息とアレルギー | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 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. | リウマチ性
> 全身性エリテマトーデス | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 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. | 自己免疫
> 自己免疫：その他 | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 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. | 患者教育
> 患者情報 | 価格設定と手頃な価格の擁護
> 価格審査委員会の交渉に参加する | 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. | 神経変性
> ハンチントン病 | 価格設定と手頃な価格の擁護
> 低所得者や脆弱な立場にある人々のコスト面での障壁に対処する | 100,000 | National | Sometimes | 119017688949 |
| Health insurance companies and health insurance reps organize activities for low income communities. | 高齢者
> 高齢者 | 価格設定と手頃な価格の擁護
> 低所得者や脆弱な立場にある人々のコスト面での障壁に対処する | 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と性の健康 | 価格設定と手頃な価格の擁護
> 低所得者や脆弱な立場にある人々のコスト面での障壁に対処する | 100 | Regional | Regularly | 119073874628 |
| We regularly provide comments to state P&T [Pharmacy and Therapeutics] committees regarding their formulary inclusions and exclusions. | 呼吸器
> 喘息とアレルギー | 価格設定と手頃な価格の擁護
> 製品の償還リスト/国家医薬品集への収載推進 | 100,000 | National | Regularly | 119011501209 |
| PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees. | 患者擁護
> 健康活動家 | 価格設定と手頃な価格の擁護
> 製品の償還リスト/国家医薬品集への収載推進 | 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. | がん
> がん：医学研究 | 価格設定と手頃な価格の擁護
> 啓発キャンペーンへの参加 | 1,000 | National | Rarely | 119044810653 |
| Advocacy in access to care issues. | がん
> がん：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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]. | がん
> がん：その他 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | 神経変性
> パーキンソン病 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 100,000 | Regional | Rarely | 119020536956 |
| ... We sent letters to States to request that they change their step requirements for access to mental health treatments. | メンタルヘルス
> メンタルヘルス：スティグマ | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | がん
> がん：医学研究 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 1,000 | National | Rarely | 119044810653 |
| Drug assistance programs and co-pay assistance foundation. | がん
> がん：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 5,000 | International | Sometimes | 119045428228 |
| We frequently engage on state and federal issues related to patient access to care. | 呼吸器
> 肺疾患 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | 肝臓
> 肝疾患：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 100,000 | National | Regularly | 119059491202 |
| We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug. | 神経学的
> 片頭痛/その他の頭痛障害 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | 患者擁護
> トレーニング | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 100,000 | International | Regularly | 119063146174 |
| State level Medicaid. | がん
> がん：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | 出血
> 出血性疾患：ほとんどの種類 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 5,000 | Regional | Regularly | 119069774462 |
| We are currently addressing access to biologic medications. | レア
> 希少疾患：免疫 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | リウマチ性
> 全身性エリテマトーデス | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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. | 全般的な健康状態
> ライフスタイル | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 100,000 | National | Sometimes | 119074217249 |
| Pharma pricing, coverage, indications. | 全般的な健康状態
> 肥満 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 100,000 | National | Regularly | 119076659022 |
| We have on only a few occasions advocated for better access to newer drugs. | メンタルヘルス
> メンタルヘルス：スティグマ | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | Over 100,000 | International | Rarely | 119078209025 |
| Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years. | 血液
> 鎌状赤血球症 | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 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.] | リウマチ性
> 全身性エリテマトーデス | アクセス経路の改善
> 医薬品・医療への公平なアクセスを促進する | 100,000 | National | Regularly | 119082751826 |
| ... We sent letters to States to request that they change their step requirements for access to mental health treatments. | メンタルヘルス
> メンタルヘルス：スティグマ | アクセス経路の改善
> アクセスと管理における格差への対処 | 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. | 出血
> 出血性疾患：ほとんどの種類 | アクセス経路の改善
> アクセスと管理における格差への対処 | 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. | レア
> 希少疾患：ほとんどの種類 | アクセス経路の改善
> 希少・超希少疾患治療へのアクセス改善 | 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. | がん
> がん：その他 | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 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. | がん
> がん：その他 | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 100,000 | International | Regularly | 119047535935 |
| Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting. | 神経変性
> 認知症 | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 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 | がん
> がん：乳房 | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 100,000 | International | Sometimes | 119052475951 |
| We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years]. | 患者擁護
> 健康活動家 | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | Do not know | National | Regularly | 119065430409 |
| Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration]. | リウマチ性
> 全身性エリテマトーデス | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 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]. | 腎臓
> 腎臓病 | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 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と性の健康 | エビデンスに基づく患者の意見
> 患者のインサイトを活用して意思決定に役立てる | 100 | Regional | Regularly | 119073874628 |
| We provide data and real-world knowledge. | 肝臓
> 肝疾患：ほとんどの種類 | エビデンスに基づく患者の意見
> 規制当局にリアルワールドエビデンス（RWE）を提供する | 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 | 肝臓
> 肝疾患：ほとんどの種類 | エビデンスに基づく患者の意見
> 規制当局にリアルワールドエビデンス（RWE）を提供する | 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と性の健康 | エビデンスに基づく患者の意見
> 規制当局にリアルワールドエビデンス（RWE）を提供する | 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. | 神経変性
> ハンチントン病 | エビデンスに基づく患者の意見
> 患者の体験談や生きた経験のナラティブを活用する | 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. | 肝臓
> 肝疾患：ほとんどの種類 | エビデンスに基づく患者の意見
> 患者の体験談や生きた経験のナラティブを活用する | 100,000 | National | Regularly | 119059491202 |
| We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug. | 神経学的
> 片頭痛/その他の頭痛障害 | エビデンスに基づく患者の意見
> 患者の体験談や生きた経験のナラティブを活用する | 100,000 | National | Rarely | 119060019780 |
| Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing. | がん
> がん：脳 | エビデンスに基づく患者の意見
> 患者の体験談や生きた経験のナラティブを活用する | 1,000 | National | Rarely | 119061176158 |
| Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting. | 神経変性
> 認知症 | エビデンスに基づく患者の意見
> 調査/研究を実施してデータを生成する | 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 | がん
> がん：乳房 | エビデンスに基づく患者の意見
> 調査/研究を実施してデータを生成する | 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と性の健康 | エビデンスに基づく患者の意見
> エビデンスとインサイトを政策インプットに変換する | 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. | 腎臓
> 腎臓病 | 診断と薬の配達
> 臨床試験デザインの共同作業 | 100,000 | National | Regularly | 119070696943 |
| Supporting legislation for multiple cancer early detection, including TV appearances and social media. | がん
> がん：介護者、家族、友人 | 診断と薬の配達
> スクリーニングと早期発見のサポート | 1,000 | Regional | Regularly | 119036085844 |
| Discussions about review and approvals of new screening technologies. | がん
> がん：ほとんどの種類 | 診断と薬の配達
> スクリーニングと早期発見のサポート | 100,000 | National | Rarely | 119045117950 |
| USPTF [U.S. Preventive Services Task Force] input. | がん
> がん：男性の | 診断と薬の配達
> スクリーニングと早期発見のサポート | 100,000 | National | Sometimes | 119050776275 |
| Sit on several panels. | がん
> がん：乳房 | 機関ガバナンス
> 政府の諮問機関における代表性を確保する | 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. | レア
> 希少疾患：ほとんどの種類 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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 | がん
> がん：乳房 | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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. | 全般的な健康状態
> ライフスタイル | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 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.] | リウマチ性
> 全身性エリテマトーデス | 機関ガバナンス
> マルチステークホルダーネットワーク内での効果的な協働 | 100,000 | National | Regularly | 119082751826 |
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