Wisconsin Rare Disease Alliance
Collaborating to Advance Rare Disease in Wisconsin
Here for Wisconsin Rare Disease
We believe every person with a rare disease in Wisconsin should have the best health outcome and quality of life possible.
The Wisconsin Rare Disease Alliance is a coalition of families, clinicians, researchers, businesses, and allies interested in engaging bipartisan support of rare diseases in Wisconsin.
We engage as a unified coalition and provide a platform to inform and engage decision makers and legislators in Wisconsin on rare disease needs. Our focus is on improving and shortening the diagnostic odyssey, improving access to treatment and care, and accelerating the development of new treatments for rare conditions.
It Takes a Village
We need the participation of all stakeholders. We work to bring rare disease stakeholders in a community to improve access and health for rare disease families in Wisconsin.
We welcome your involvement!
We welcome your involvement!
Rare Disease Facts
34% of Americans are inadequately insured, while 9% are completely uninsured
1 in 10 Wisconsinites has a rare disease
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
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.
Latest Wisconsin Rare Disease News
