HEDI
什么是 Rare360？
Rare360是由 开发的程序成人生活稀有倡议。 Designed to c建立以社区为中心的利益相关者致力于发展可信赖的社区关系，rare360 要求重视罕见病患者或照顾罕见病患者的观点、见解和经验 (PIE)（参考RAM 对罕见病洞察的公平市场价值）。
一项享有盛誉的独家合作伙伴计划，只有经过全面审查的组织才有资格成为罕见的 360 合作伙伴。有资格获得罕见 360 合作伙伴关系的行业、学术和倡导型利益相关者必须以社区为中心，并真诚地致力于通过尊重和维护生活体验专家和顾问的既定公平市场价值来改善患者、护理人员及其家人的生活。罕见病生态系统。
Establishing the Rare Disease Centre of Excellence at SMU
Over 400 million people across the globe are expected to have either been born with a rare disease or to have acquired a rare disease during their lives. More than 7000 rare diseases have currently been identified with 80% of them being genetic in origin. Unfortunately, not every person living with a rare disease has access to diagnostic services; without which they are unable to seek appropriate treatment for their often debilitating conditions. The lack of a global diagnostic infrastructure/patient database has resulted in the compromise of promising clinical trials seeking to establish therapeutic efficacy.
The HEDI initiative is a collaborative effort hosted by RAM, a global rare disease community-based advocacy network. Together with a diverse team of internationally based experts (including but not limited to healthcare specialists, leaders in diagnostics, academia, business operations, research, etc.), RAM is leading the charge in partnership with Rare Love Ventures, through the Rare360 program.
Due to the limited data on human diversity across the globe, the HEDI initiative seeks to establish a comprehensive and sustainable Rare Disease Centre of Excellence at Sefako Makgatho Health Sciences University (SMU). RAM has chosen SMU as its first partner in Africa because SMU is uniquely positioned with the potential to serve the needs of the global rare disease community through comprehensively designed diagnostics and clinical services, as well as supporting therapeutic research and development programs. HEDI seeks to effectively address the global human health data crisis and allow researchers to finally gain responsible and equitable access to valuable human health data from regions that have otherwise been marginalized by the Western world, beginning with Africa, Asia, and Central America.
RAM empowers people within the rare disease community through novel, sustainable, and conscious initiatives that aim to give every person living with a debilitating rare disease a chance at life, regardless of socioeconomic status.
