ApoE4阿尔茨海默病联盟成立，为ApoE4患者发声，敦促FDA采取行动-动脉网

ApoE4 Alzheimer's Alliance Launches to Advocate for ApoE4 Patients, Urges FDA Action

CISION 等信源发布 2025-04-30 01:03

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WASHINGTON

华盛顿

，

April 29, 2025

2025年4月29日

/PRNewswire/ -- The ApoE4 Alzheimer's Alliance, a new patient advocacy organization, is launching to amplify the voices of individuals with the ApoE4 gene and work with organizations to enact policy priorities. The Alliance will advocate for the unique needs of this community before U.S. policymakers and the U.S.

/PRNewswire/ -- ApoE4阿尔茨海默病联盟，一个新的患者倡导组织，即将成立，旨在放大携带ApoE4基因个体的声音，并与各组织合作推动政策优先事项。该联盟将在美国政策制定者和美国政府面前为这一群体的独特需求进行倡导。

Food and Drug Administration (FDA), pushing for accelerated progress toward innovative treatments and supportive policies..

美国食品药品监督管理局 (FDA)，推动加快创新治疗和支持性政策的进展。

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Individuals with the ApoE4 gene are at a significantly higher risk of developing Alzheimer's disease, often experiencing earlier onset, rapid disease progression, and limited therapeutic options. Despite this heightened risk, ApoE4 patients remain underrepresented in research and underserved in clinical care..

携带ApoE4基因的个体患阿尔茨海默病的风险显著更高，通常表现出更早的发病、更快的疾病进展以及有限的治疗选择。尽管存在这种更高的风险，ApoE4患者在研究中仍然代表性不足，在临床护理中也未得到充分服务。

The ApoE4 Alzheimer's Alliance is committed to addressing these disparities through:

ApoE4阿尔茨海默病联盟致力于通过以下方式解决这些差异：

Advocacy:

倡导：

Lobbying for increased federal funding for ApoE4-specific research, urging policymakers and the FDA to prioritize ApoE4-targeted therapies, and promoting equitable access to diagnostic testing and care.

游说增加对ApoE4特定研究的联邦资金，敦促政策制定者和FDA优先考虑针对ApoE4的疗法，并推动诊断测试和医疗的公平获取。

Education:

教育：

Raising awareness about the heightened risk for ApoE4 carriers, providing resources and support to patients and caregivers, and engaging with medical professionals to improve ApoE4-specific care protocols.

提高ApoE4携带者对更高风险的认识，为患者和护理人员提供资源和支持，并与医疗专业人员合作以改进ApoE4特定护理协议。

Partnership Building:

伙伴关系建立：

Collaborating with pharmaceutical companies to advance ApoE4-targeted drug development, partnering with academic institutions to fund cutting-edge research and to amplify lived experiences and policy priorities.

与制药公司合作，推进针对ApoE4的药物开发，与学术机构合作，资助前沿研究，并放大生活体验和政策重点。

Patient Storytelling:

患者故事讲述：

Highlighting real-world experiences of APOE4 patients and caregivers to humanize the challenges and drive urgency for action.

突出显示APOE4患者和护理人员的真实生活经历，以人性化地展现挑战并推动采取行动的紧迫性。

In conjunction with its launch, the Alliance has sent an open letter to the FDA Commissioner, Dr.

与此同时，该联盟向美国食品和药物管理局局长发了一封公开信，

Martin A. Makary

马丁·A·马卡里

, MD, urging the agency to take specific actions to protect ApoE4 patients, particularly considering recent research highlighting the risks associated with current Alzheimer's treatments for this population.

医学博士，敦促该机构采取具体行动保护ApoE4患者，特别是考虑到最近的研究强调了当前阿尔茨海默病治疗对该人群的风险。

Key points from the letter include:

信中的要点包括：

Require APOE Genotyping Prior to Treatment:

治疗前需要进行APOE基因分型：

The Alliance calls for a regulatory mandate that all patients considering anti-amyloid antibody treatments undergo APOE genotyping to assess their individual risk profile.

联盟呼吁制定一项监管规定，要求所有考虑接受抗淀粉样蛋白抗体治疗的患者进行APOE基因分型，以评估其个体风险状况。

Mandate Full Disclosure of Genetic Risk in Clinical Trials:

要求在临床试验中充分披露遗传风险：

The letter emphasizes the need for transparency, ensuring that participants in clinical trials are informed of their APOE status.

这封信强调了透明度的必要性，确保临床试验的参与者被告知他们的APOE状态。

Enhance Risk Communication in Practice:

加强实践中的风险沟通：

The Alliance advocates for updated labeling and prescribing guidelines that explicitly outline the elevated ARIA risk in ApoE4 carriers.

联盟主张更新标签和处方指南，明确列出ApoE4携带者患ARIA风险升高的情况。

Support Targeted Clinical Trials:

支持针对性临床试验：

The letter urges the FDA to encourage and facilitate clinical trials that specifically address the safety and efficacy of anti-amyloid therapies in APOE4 homozygotes.

这封信敦促 FDA 鼓励并促进专门针对 APOE4 纯合子患者抗淀粉样蛋白治疗的安全性和有效性进行临床试验。

'The APOE4 community faces unique challenges that demand immediate attention,' said

“APOE4社区面临着需要立即关注的独特挑战，”

Jamie Tyrone

杰米·泰隆

, Board Member of the ApoE4 Alzheimer's Alliance. 'Our goal is to drive meaningful change by advocating for research, access to care, and policies that address the specific needs of ApoE4 patients and their families.'

，ApoE4阿尔茨海默病联盟董事会成员。 “我们的目标是通过倡导研究、获得护理和解决ApoE4患者及其家人特定需求的政策来推动有意义的改变。”

The ApoE4 Alzheimer's Alliance is committed to working collaboratively with all stakeholders to accelerate progress in Alzheimer's research and improve the lives of those affected by this devastating disease.

ApoE4阿尔茨海默病联盟致力于与所有利益相关者合作，加速阿尔茨海默病研究的进展，并改善受这种毁灭性疾病影响的人们的生活。

About ApoE4 Alzheimer's Alliance:

关于ApoE4阿尔茨海默病联盟：

The ApoE4 Alzheimer's Alliance is a patient advocacy organization dedicated to representing the interests of ApoE4 Alzheimer's patients. The Alliance advocates for tailored treatment strategies, increased research funding, and equitable access to care for this high-risk population.

ApoE4阿尔茨海默病联盟是一个患者倡导组织，致力于代表ApoE4阿尔茨海默病患者的权益。该联盟主张为这一高风险人群制定个性化的治疗策略、增加研究资金投入，并推动医疗资源的公平获取。

SOURCE ApoE4 Alzheimer's Alliance

来源：ApoE4阿尔茨海默病联盟

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