COLLABORATIONS

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.

Understanding the Evolving Perspectives of Patient Advocacy Groups and Their Role in Drug Development

The Rare Advocacy Movement (RAM) and Covance have come together for an extremely important project specifically targeting the leaders of Advocacy Groups. Upon conclusion of the data collecting process, the results of this 10 minute survey will be presented back to the marketplace and used to continue to find ways to better embed the critical pulse of the patient throughout the continuum.

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