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.
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.
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.
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.