In order to unite experts and eliminate bottle necks, one must truly understand the patient advocacy landscape and ensure all stakeholders have, not only a seat, but a voice at the table. Too often within the rare disease advocacy landscape, community leaders engage in the act of developing siloed subgroups, in an attempt to claim territorial control over a specific advocacy environment.  


In an attempt to offer information vital to closing gaps and building bridges amongst stakeholders, the Rare Advocacy Movement (RAM) has created an online survey for patient advocacy group leaders and founders to inform on the territorial dynamics of their patient advocacy nonprofit community (i.e splinter group development, non-collaborative clique organizational development, etc.). 

The survey will generate insightful data which RAM will use to help inform public discussions regarding the unification of patient advocacy groups, and raise awareness of the challenges that patient advocacy leaderships face when serving the patient community. 

All patient advocacy leaders and group founders involved in the nonprofit sector are invited to take part in the survey to share their thoughts and experiences. You have the option to choose to remain anonymous. You also have the option to get more involved at the end of the survey. The survey should take no more than 15 minutes to complete. 


Once you complete the survey, please share the survey link with others patient advocacy professionals, organizations and social media networks. Thank you.

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 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".   ​

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The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex ecosystem and unique dynamics of the rare disease patient advocacy landscape. RAM serves as community-based professional network and Center of Insight (COI) for rare disease focused stakeholders. The RAM membership is comprised of a network of patient advocacy community expert professionals that have vowed to abide by the established Code of Conduct for Membership.