RareRising (formerly Upequity)
Partners in Advancing Change for Rare Diseases
There is Urgency and Opportunity
Lasting Change Requires a United Effort
Rare diseases are defined by the FDA as diseases or conditions that affect less than 200,000 people and impact more than 30 million Americans and over 400 million people worldwide. There are more than 10,000 different kinds of rare diseases but very few, less than 10%, have options for treatment and many are life-threatening.
There is hope. In recent years, significant policies, systems and investments have advanced in rare diseases. Currently, many clinical development projects are underway, including new and improved treatments and potentially curative cell and gene therapies.
At RareRising, we are committed to supporting the collective movement to ensure healthcare is accessible to everyone in need.
Moving Rare Disease Forward
The Time is Now to Rise!
RareRising (formerly 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 are organized into several key areas:
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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.
Rare Disease Facts
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
*Sources include: International Federation of Pharmaceutical Manufacturers and Associations, National Institutes of Health, Rare-X, EveryLife Foundation for Rare Diseases, and Global Genes.
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