Helping Drive Rare Disease Forward
Providing Real World Evidence and Exploring Change
Upequity is a registered 501c3 nonprofit that delivers patient-centered, evidence-based research, incubates emerging rare disease entities on their journey, and explores novel solutions to positively impact rare disease communities. We engage in work that supports advancing systems and policy changes, eliminating barriers, and producing tangible improvements in people’s lives. Our work prioritizes underrepresented and underserved rare disease populations who are often marginalized or forgotten including women, people of color, LGBTQ+, the elderly, disabled, rural, and those struggling with limited financial resources.
Our Why
We exist to challenge the status quo and advance change that helps families with rare and serious diseases live their healthiest, best lives.
We are inspired to meaningfully contribute to the movement to advance health equity in rare diseases and believe that we have a responsibility as well as the unique skills, knowledge and experience to contribute.
We are inspired to meaningfully contribute to the movement to advance health equity in rare diseases and believe that we have a responsibility as well as the unique skills, knowledge and experience to contribute.
Our Work
Upequity is organized into two key areas: Our Research and Our Lab
Our Research
We conduct leading patient-centered research focused on projects that support advancing systems or policies that improve the care for underrepresented and underserved populations in rare disease. For specific rare disease research, we typically partner and collaborate with experienced patient advocacy organizations in that disease area.
Our studies tend toward mixed method strategies that gather and analyze quantitative and qualitative data. Studies are IRB (Institutional Review Board) approved and led by researchers and PhD-level professionals.
Our Lab
Upequity leads its own lab projects and programs, provides operations to coalitions, as we as acts as an incubator and accelerator for other nonprofit organizations building their own rare disease platforms.
We test novel, evidence-based programs and projects that facilitate awareness and education and amplifies the voice of underrepresented patients and families. Our Lab allows for experimentation with ideas that may (or may not) work in a safe environment!
Rare Disease Facts
Sources include: International Federation of Pharmaceutical Manufacturers and Associations, National Institutes of Health, Rare-X, EveryLife Foundation for Rare Diseases, and Global Genes.
34% of Americans are inadequately insured, while 9% are completely uninsured
30% born with a rare disease will not live to see their 5th birthday
1:10 American suffer from a rare disease
Approximately 2/3 of Americans with rare diseases are children
Genetic testing could help diagnose many rare diseases
85% of rare diseases are genetic
The economic burden of rare disease reached nearly $1 Trillion in the US
1 in 2 rare diseases don’t have a foundation or research support group
Rare disease patients experience significantly more anxiety & depression
Only 5% of rare diseases have treatments
95% of rare diseases lack an FDA-approved treatment
On average, a rare disease is misdiagnosed 2-3 times
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