Patient Advocacy Community Dynamics

A RAM Membership Collaboration

Members of the Rare Advocacy Movement (RAM) have organized to conduct an international analysis of the patient advocacy community leadership dynamics in an attempt to obtain insights that will guide discussions to practical unifying solutions.

ADULTS LIVING RARE

A RAM - TPS Collaboration

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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.

MISSING ENDPOINTS

A RAM - ThinkGen Collaboration

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The Rare Advocacy Movement (RAM) and ThinkGen teamed up to research and document the relevance of rare disease advocacy expertise in clinical trial design and the potential consequences of non-inclusion.

CONNECTING WITH RARE DISEASE COMMUNITIES

A RAM - Covance Collaboration

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The Rare Advocacy Movement (RAM) and Covance teamed up to gain a better understanding of the evolving perspectives of patient advocacy groups and their roles in the drug development continuum.

SUPPORT BEYOND THERAPEUTIC PRODUCTS

A RAM Membership Collaboration

Members of the Rare Advocacy Movement (RAM) organized in the first RAM Membership Collaboration to document the holistic toll levied upon rare disease patients, caregivers, and families. 

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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.