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。
Starting in Africa, Asia and Central America
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 10,000 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 often debilitating conditions. The lack of efficient diagnostic infrastructures has not only impacted the lives of several patients and their loved ones, but also compromises the advancement of research and development.
The HEDI initiative is a collaborative effort hosted by RAM. 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.
In an effort to complete the HEDI initiative, RAM continues to partner with stakeholders that are uniquely positioned to serve the needs of the global rare disease community through comprehensively designed diagnostic and clinical services and therapeutic research and development programs. HEDI seeks to effectively address the global human health data crisis and provide researchers with responsible and equitable access to human health data without exploiting patients from regions that have otherwise been marginalized, beginning with Africa, Asia, and Central America.
RAM seeks to empower people within the rare disease community through novel, sustainable, and conscious initiatives to give every person living with a debilitating rare disease a chance at life, regardless of socioeconomic status.