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 novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.