HEDI
Ce este Rare360?
Rare360 este un program dezvoltat de the Adults Living Rare Initiative. Designed to cConectați părțile interesate concentrate pe comunitate dedicate dezvoltării de relații de încredere bazate pe comunitate, rare360 necesită ca Perspectivele, Perspectivele și Experiențele (PIE) ale persoanelor care trăiesc cu boli rare sau care îngrijesc o persoană cu o afecțiune rară să fie evaluate (referințăValorile echitabile de piață ale RAM pentru informații despre bolile rare).
Un program de parteneriat prestigios și exclusiv, doar organizațiile verificate cu atenție se califică pentru a deveni parteneri rare360. Părțile interesate din industrie, academice și de advocacy care se califică pentru un parteneriat rare360 trebuie să fie concentrate pe comunitate și să fie sincer dedicate îmbunătățirii vieții pacienților, îngrijitorilor și familiilor acestora prin respect și prin susținerea valorii de piață echitabile stabilite a experților și consilierilor din experiența trăită. ecosistemul bolilor rare.
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.