Publications
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 space to gain an overall understanding of the rare disease landscape.
RAM Publications are collaborative articles and reports that reveal rare disease insights that matter to the community.
Contact Us if you are interested in collaborating with RAM members on the development of a publication and/or an initiative that provides real world insights into the various complexities of 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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Foundation Papers - the EveryLife Foundation for Rare Diseases
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Clinical Trial Charts & Stats - CISCRP
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Rare Diseases: Common Issues in Drug Development; Draft Guidance for Industry; Availability - FDA
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Rare Diseases: Natural History Studies for Drug Development Guidance for Industry - FDA
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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