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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.

Sisters
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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:
(click the icons to learn more)

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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.
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Rare Disease Facts

34% of Americans are inadequately insured, while 9% are completely uninsured

34% of American are inadequately insured, while 9% are completely uninsured

30% born with a rare disease will not live to see their 5th birthday

Cake 30%

1:10 American suffer from a rare disease

1 in 10 people

Approximately 2/3 of Americans with rare diseases are children

2/3 children

Genetic testing could help diagnose many rare diseases

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85% of rare diseases are genetic

DNA

The economic burden of rare disease reached nearly $1 Trillion in the US

Costs breaking back

1 in 2 rare diseases don’t have a foundation or research support group

Lonely

Rare disease patients experience significantly more anxiety & depression

Depressed

Only 5% of rare diseases have treatments

1 in 20

95% of rare diseases lack an FDA-approved treatment

No treatment

On average, a rare disease is misdiagnosed 2-3 times

Target Misdiagnosed

*Sources include: International Federation of Pharmaceutical Manufacturers and Associations, National Institutes of Health, Rare-X, EveryLife Foundation for Rare Diseases, and Global Genes.

Latest RareRising News

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