HEDI
Was ist Rare360?
Rare360 ist ein Programm, das von the entwickelt wurde.Adults Living Rare-Initiative. Designed to connect Community-fokussierte Stakeholder, die sich der Entwicklung vertrauensvoller Community-basierter Beziehungen verschrieben haben, verlangt rare360, dass die Perspektiven, Erkenntnisse und Erfahrungen (PIE) von Menschen, die mit seltenen Krankheiten leben oder sich um eine Person mit einer seltenen Erkrankung kümmern, geschätzt werden (ReferenzFaire Marktwerte von RAM für Einblicke in seltene Krankheiten).
​
Als prestigeträchtiges und exklusives Partnerschaftsprogramm qualifizieren sich nur gründlich geprüfte Organisationen dafür, rare360-Partner zu werden. Stakeholder aus Industrie, Wissenschaft und Interessenvertretung, die sich für eine rare360-Partnerschaft qualifizieren, müssen gemeinschaftsorientiert sein und sich aufrichtig dafür einsetzen, das Leben von Patienten, Betreuern und ihren Familien durch Respekt und die Aufrechterhaltung des etablierten fairen Marktwerts von Experten und Beratern für gelebte Erfahrung zu verbessern Das Ökosystem der seltenen Krankheiten.
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. Approximately 8000 rare diseases have currently been identified with 72% 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.