"Our Lives Matter"

by Rare Black Lives Matter Too

A RAM Membership - Contributor Collaboration

Members of the Rare Advocacy Movement (RAM) have partnered with Disability Advocacy Professional Contributors to organize a call to action for the nonprofit advocacy sector. Additionally, as a unit, the Rare Black Lives Matter Too team has become the most qualified team of DEI experts in the rare disease and disability space to advise and consult rare disease industry stakeholders truly interested in establishing and supporting diversity, equity and inclusion programs. 

Patient Advocacy

Territorial 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 establishing siloed territories within patient advocacy communities and to obtain insights on the effects of conflicts between groups over obtaining control over community territories, to guide discussions towards the development of practical unifying solutions.


A RAM - TPS Collaboration


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.


A RAM - ThinkGen Collaboration


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.


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.


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 patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.