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. 


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 internal dynamics of their patient advocacy nonprofit community. 

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 the 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 group of patient advocacy professionals dedicated to the overall advancement of the rare disease patient advocacy professional ecosystem and landscape. Membership and participation in RAM is subject to the observance of the established Code of Conduct for Membership ("Code of Conduct") and the acceptance of the established and adopted RAM Process Document. All members and affiliates of RAM vow to abide by the established Code of Conduct. Any RAM member or affiliate who may violate the Code of Conduct in parts and/or in its entirety will be subject to immediate removal from the RAM membership and/or affiliation.