The Rare Advocacy Movement, a rare disease community leadership network, was founded on the premise of developing mutually beneficial collaborations between rare disease community leaders and other rare disease stakeholders, with the goal of developing insightful publications dubbed "RAM Collaborations". RAM Collaborations like "Adults Living Rare" and "Missing Endpoints" are research collaboration projects between select members of RAM and a rare disease focused stakeholder organization/company that cover areas of interest to the rare disease community and its' dedicated leaderships and influencers. 

If you are interested in discussing the potential of developing a RAM Collaboration, please feel free to submit a proposal.

If you would like for the RAM membership to consider listing a resource (i.e. publication, networking event, funding opportunity, etc.) to be of use to the rare disease patient advocacy leadership community, please email us the answers to the following questions for consideration.

  1. Why do you believe your resource may be of interest to leaders and/or experts from the rare disease community?

  2. Briefly describe your philosophy of the role of patient advocacy in the rare disease landscape.

  3. Please let us know any additional information that you would like to be taken into consideration with your request. 

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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.