Rare Disease United

Patient Leader

The Rare Disease United Foundation is the nation’s leading rare disease advocacy organization. RDUF works on the challenges facing rare disease patients both locally and nationally. In five years, RDUF has gone from the first state-based, non-disease specific non-profit to the voice of the 60 million people in the United States suffering from the physical, emotional and financial stress of living with a rare disease. RDUF programs target specific issues and approach them with the wisdom, knowledge and passion that comes with living rare.


Advocating for Another Health Activist Hero Patient Leader Hero

Rare Disease United Foundation raises the vibration and makes a positive difference in the lives of those suffering from Orphan, Undiagnosed and Rare disorders.  — Lori

Patricia started a non-disease specific state-based foundation for rare diseases in Rhode Island. Her foundation did really well. She worked on bill with U.S. Senator Sheldon Whitehouse that President Obama signed into law. She raises awareness and even built one rare disease group a website. She did so well that now there is a chapter in Massachusetts. She now has two chapters of the Rare Disease United Foundation.  — Olivia

As a PharmD, President/CEO of EDSers United & Volunteer Director of the RDUF NJ chapter, I have met many rare disease patient advocates. Patty shines above them all with her passion, complete dedication to the advancement of the rare disease community, & her great accomplishments through the Rare Disease United Foundation, a nonprofit she founded.  — Nadia

Rare Disease United

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