RAM is a network of trusted key opinion leaders (KOLs) and experts in the field of rare disease patient advocacy. One of the goals of RAM is to organize and share the unique and valuable insights from rare Leaders and rare Advocates from all corners of the rare disease ecosystem to gain a comprehensive understanding of the rare disease landscape. The following is a comprehensive list of reports, white papers, guidances and more from leaders and administrative organizations/agencies dedicated to 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
