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 structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.