DEI Survey Cover

We are thrilled to share our findings from our survey on DEI efforts in rare disease organizations. Special thanks to our partner, Rare Disease Diversity Coalition, and Upequity’s Principal Investigator, Dr. Teneasha Washington, for the amazing work!

We are excited to offer the full 36-page “A Report of Survey Findings: Diversity, Equity, and Inclusion Efforts in Rare Disease Organizations” released on 02/28/2023 for free download.

Click here to download the free PDF now.

1:10 Americans suffer
from a rare disease
30% born with a rare disease will not live to see their 5th birthday
34% of Americans are inadequately insured, while 9% are completely uninsured

Who We Are

Upequity delivers patient-centered, evidence-based research, novel projects and incubates emerging entities to drive improved access to quality, affordable healthcare for underserved populations with rare and serious health conditions.

Our North Star aim is where quality and affordable healthcare is accessible to all who need it. This is our guide, our anchor, our beacon, and inspiration in all that we do.



7 hours ago

We’re continuing to celebrate Women’s History Month. Have you heard of Helen Rodriguez Trias? She was the first Latino woman to be president at the American Public Health Association. She also co-founded the Campaign to End Sterilization Abuse and helped create strict federal guidelines for consent for medical procedures! #WomensHistoryMonth See MoreSee Less
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1 day ago

Don’t miss your chance to learn more about Rare Disease Advisory Councils! Register at RDII – Rare Disease Innovations InstituteHave you heard about Rare Disease Advisory Councils? Would you like to learn more about how to start RDACs, how to continue growth of RDACs, how to advocate for legislative policy changes? If yes, you should register for our THRIVE! virtual conference! Register at #RDAC #rarediseaseadvisorycouncil #rarediseasevirtualconference See MoreSee Less
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Are you interested in learning more about rare disease advisory councils? Register for @rdii_org for their THRIVE! virtual conference!

No matter the struggle you may be facing, there is always something to smile about. Celebrating International Day of Happiness! #internationaldayofhappiness #keepsmiling

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