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What is the Rare Advocacy Movement (RAM)?

    RAM is a rare disease community leadership network founded on the premise of developing mutually beneficial collaborations between rare disease community leaders, influencers, experts 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 that cover areas of interest to the rare disease community and its’ dedicated leadership and influencers. RAM membership removes toxic competition amongst community rare disease leaders, influencers and experts and replaces it with support, camaraderie and mentorship as patient advocacy professional navigate the rare disease industry, regardless of which disease specific community one originally belongs to. The RAM network encourages unity, collaboration and support amongst the membership, embracing the concept, “a win for one is a win for us all”.


    The rare disease advocacy landscape is a rapidly evolving complex environment with several stakeholders with varying degrees of agendas and unique (often turbulent) dynamics that are often difficult to navigate successfully, delaying and at times, threatening the commercialization of promising rare disease therapies. In response to industry’s call for rare disease community insights, RAM was organized in order to shine a light on dedicated rare disease patient advocacy community influencers and experts who have vowed to remain transparent, clarify misunderstandings and to ensure that the rare disease community is not overlooked, ignored or misrepresented. Not every rare disease advocate qualifies to be a RAM member. Membership is quite prestigious and offered to rare disease advocacy leaders, influencers and experts who have expressed interest in working in a collaborative professional environment. First a potential applicant must complete a RAM Application. Once a digital profile and a recorded interview is conducted, the applicant must undergo a 5-day feedback period, followed by a 2 week voting period, where ultimately a majority vote amongst the existing membership is the only way to obtain RAM membership. Each RAM member must also agree to abide by the Code of Conduct for Membership for the duration of their membership. While RAM membership is not for every advocate, a rare disease advocate does not need to be a RAM member in order to participate in a RAM Collaboration. Through the execution of RAM Collaborations, rare disease stakeholders have the opportunity to vet each other in a safe professional environment, while working on a community enhancing project. At the conclusion of a RAM Collaboration, a resourceful publication is presented to the rare disease community, giving credit to the authors, contributors and organizations that worked together to execute the project. Rare disease focused stakeholders and organizations are encouraged to submit RAM Collaboration Proposals for consideration.

    A Diverse Network Welcomes New Members!

    RAM is dedicated to amplifying community-connected rare disease leaders, influencers and experts with a strong moral code and dedicated professionalism aimed at connecting the bridge between the drug development industry and the patient community. You’re encouraged to learn more about RAM’s newest members! Click on the names below to be directed to each member’s RAM profile.

    Questions? Comments?

    We want to hear them. Send a message to the RAM network by emailing or messaging the membership directly via the RAM website. Or if you’d like to contact a RAM member directly, you can find their direct contact details on their RAM profile.