The Foundation Fighting Blindness is a 50‐year old 501c(3) non‐profit organization dedicated to supporting the development of treatments and cures for people affected by the inherited retinal diseases (IRD), a group of clinical diagnoses that include orphan diseases such as retinitis pigmentosa, Usher syndrome, and Stargardt disease, among others. Over $760 M has been raised and invested in preclinical and clinical research and resources. Key resources include a multi‐national clinical consortium, an international patient registry with over 15,700 members that is expanding rapidly, and an open access genetic testing program that provides no cost comprehensive genetic testing to people clinically diagnosed with an IRD living in the United States. These programs are described with particular focus on the challenges and outcomes of establishing the registry and genetic testing program.

中文翻译：

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在非营利性基金会内实施针对遗传性视网膜疾病的注册表和开放获取基因测试计划。

Foundation Fighting Blindness是一家有着50年历史的501c（3）非营利组织，致力于支持受遗传性视网膜疾病（IRD）影响的人们的治疗和治愈方法的发展，IRD是一组临床诊断，包括诸如以下的孤儿疾病：色素性视网膜炎，Usher综合征和Stargardt病等。已经筹集了超过7.6亿美元，并投资了临床前和临床研究及资源。关键资源包括一个跨国临床协会，一个拥有超过15700名会员的国际患者注册机构，该机构正在迅速扩大，以及一个开放获取基因测试计划，该计划向居住在美国的临床诊断为IRD的人们免费提供全面的基因测试。