HEDI
Rare360とは？
Rare360 は the によって開発されたプログラムです。大人の生活レアイニシアチブ。 c に設計信頼できるコミュニティベースの関係を築くことに専念しているコミュニティに焦点を当てた利害関係者を結びつけるため、rear360 では、希少疾患を患っている人々や希少疾患を持つ人々の世話をしている人々の視点、洞察、経験 (PIE) を重視する必要があります (参照希少疾患の洞察に対するRAMの公正な市場価値）。
権威ある排他的なパートナーシップ プログラムであり、徹底的に吟味された組織だけが、rare360 パートナーになる資格があります。レア360パートナーシップの資格を得る業界、学術、および擁護に基づく利害関係者は、コミュニティに焦点を当て、患者、介護者、およびその家族の生活を尊重し、生活経験の専門家およびアドバイザーの確立された公正な市場価値を維持することにより、患者、介護者、およびその家族の生活を改善することに誠実に専念する必要があります。希少疾患エコシステム。
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.
