HEDI
Qu'est-ce que Rare360 ?
Rare360 est un programme développé par the Initiative pour les adultes vivant dans des conditions rares. Conçu pour cPour connecter les parties prenantes axées sur la communauté et dédiées au développement de relations communautaires de confiance, rare360 exige que les perspectives, les idées et les expériences (PIE) des personnes vivant avec des maladies rares ou s'occupant d'une personne atteinte d'une maladie rare soient valorisées (référenceJustes valeurs marchandes de RAM pour les connaissances sur les maladies rares).
​
Un programme de partenariat prestigieux et exclusif, seules les organisations minutieusement contrôlées se qualifient pour devenir des partenaires rare360. Les parties prenantes de l'industrie, du milieu universitaire et du plaidoyer qui se qualifient pour un partenariat rare360 doivent être axées sur la communauté et sincèrement dévouées à l'amélioration de la vie des patients, des soignants et de leurs familles par le respect et en maintenant la juste valeur marchande établie des experts en expérience vécue et des conseillers de l'écosystème des maladies rares.
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.
