RAM is a network of rare disease community advocates, experts and vetted allies that have made a public vow to uphold a moral code of conduct that always places the best interests of the diverse rare disease community first. Misinformation and adulterated community insights are extremely damaging to the diverse members of the rare disease community. RAM's network is dedicated to correcting misinformation and providing guidance to rare disease focused stakeholders interested in obtaining accurate unfiltered rare disease community insights for a comprehensive understanding of the rare disease landscape. The following is a comprehensive list of reports, white papers, guidances and more from various leaders and administrative organizations/agencies dedicated to improving the rare disease landscape.
Reports, White Papers & More from leaders in the rare space
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Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database - EURORDIS-Rare Diseases Europe, Orphanet & Orphanet Ireland *Note: The analysis is of rare genetic diseases and is therefore conservative as it does not include rare cancers, nor rare diseases caused by rare bacterial or viral infectious diseases or poisonings.
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Patient partner compensation in research and health care: the patient perspective on why and how - Patient Experience Journal
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Caregiving in the US 2015 Report - National Alliance for Caregiving
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Clinical Trial Charts & Stats - CISCRP
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Why No Single Health Incentive Works - NEJM Catalyst
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Defining patient centricity with patients for patients and caregivers: a collaborative endeavour - BMJ Innovations
