The rare disease community is inherently diverse, as it affects more than 30 million (about 1 in 10) Americans and 400 million people worldwide. Since the vast majority of rare diseases are genetic in origin, however, we tend to know more about the diversity of biological factors influencing disease populations – and what they share in common in terms of diagnostic and access challenges, lack of available treatments, etc., — than we do about how health equity, diversity and inclusion issues specifically and proportionally relate to rare disease communities.

Global Genes is committed to creating an environment that values and respects the differences and similarities between individuals and cultures in order to advance equity and access to quality care throughout the rare disease community. In alignment with our commitment to diversity, equity and inclusion,  we have formed the RARE Health Equity Leadership Council in order to better understand the persistent gaps in diagnostic challenges for underserved/underrepresented patient communities and align on how to take action to address health inequities of the rare disease community.

 
The council is focused on building a more equitable paradigm for access, care and research for patients, families, and advocates  in the rare disease community.  Council members are instrumental in informing and guiding our programs, content and advocacy to support more equitable access, care and research for patients, families, and advocates in the rare disease community as well as supporting health equity capacity building for patient organizations.
 
Read more about our RARE Health Equity Leadership Council in our press release.

Thank you to Alexion Charitable Foundation, Genentech, Horizon Therapeutics, Ionis Pharmaceuticals,  Travere Therapeutics, Ultragenyx & Zogenix,  for your support of this council. For more information, please contact [email protected]

RARE Health Equity Leadership Council Members