Rare Focused


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



  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex ecosystem and unique dynamics of the rare disease patient advocacy landscape. RAM serves as community-based professional network and Center of Insight (COI) for rare disease focused stakeholders. The RAM membership is comprised of a network of patient advocacy community expert professionals that have vowed to abide by the established Code of Conduct for Membership.