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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.


RAM is dedicated to documenting the rare disease landscape and assisting various stakeholders in successfully navigating the patient advocacy community. In order to effectively navigate the rare disease community, one must understand the unique realities of the patients, caregivers and their support systems. 


In order to obtain the opportunity to gain the understanding needed in order to effectively navigate the rare disease community, trust must be developed through a vetting process. RAM offers a unique platform where members of industry and other patient advocates can join seasoned advocacy leaders in the vetting process of various stakeholders interested in learning about the complex dynamics of the rare disease advocacy landscape. 

Current Collaborations


Adults Living Rare

The Rare Advocacy Movement (RAM) and The Planning Shop (TPS) have teamed up to gain a better understanding of what the rare disease landscape looks like in the U.S. for adults aged 18 and over. This survey will generate useful data which RAM and TPS will use in a number of campaigns to help inform public discussions about rare diseases, and raise awareness of the challenges that adults living with rare conditions face on a daily basis.