Rare Focused


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.



  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a rare disease community-based advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based Center of Insight and Collaboration for rare disease focused stakeholders seeking authentic collaborations and comprehensive community insights. Each current RAM member has made a public vow to always act in the best interests of the rare disease community through the adopted Code of Conduct for Membership or risk being removed from the RAM membership and network.