Top 50 Feature: Rare Disease United Foundation

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Who We Are

The Rare Disease United Foundation is the nation’s leading rare disease advocacy organization. We are a non-disease specific, community-based organization, working at a state-level on legislation that has a direct impact on people living with a rare disease, providing support locally, and establishing relationships at local hospitals and medical schools. RDUF has also created groundbreaking programs like our Rare Care Collaborative Project which is a lecture series by rare disease patients and caregivers to 1st and 2nd year medical students and our Beyond the Diagnosis Art Exhibit which will travel around the country to medical schools and hospitals. Living rare has led RDUF to create programs that directly address our unmet needs. Our mission is to create real change for the rare disease community. Change for Rare is Here!

How We Were Formed

My name is Patty Ferland Weltin. My daughter, Olivia, was born with a rare disease. Like most people living with a rare disease, it took several years before Olivia was diagnosed. In March of 2011, Olivia underwent spinal cord surgery to untether her spinal cord. One night, as I sat by Olivia’s bed in the hospital, I started thinking about the issues rare patients and their families face and how similar our journeys are despite the disease. As I looked at Rare Disease Day 2011 events around the country, I was struck by how few people attended events considering that 30 million Americans are affected. There had to be a better way. How can you mobilize 30 million people with 7,000 different diseases? That’s when the idea to start the Rhode Island Rare Disease Foundation was formed. After my daughter’s recovery, I began the process of starting the foundation. In September of 2011, the RIRDF was born. Our first Rare Disease Day event in 2012 was attend by 150 brave souls who drove through a blizzard to be there. We worked with U.S. Senator Sheldon Whitehouse on the EXPERRT Act, which allows the FDA to bring in outside experts when reviewing rare disease treatments. President Obama signed it into law in July of 2012. We became a member of the Rhode Island Health Advocacy Forum. The R.A.R.E. Program (RIRDF Advancing Rare Education) was introduced into a few local schools. “Here for Rare” Meet-ups were created to support people living with a rare disease and their families. Our success in Rhode Island led us to expand into Massachusetts. The Rhode Island Rare Disease Foundation became the Rhode Island Rare Disease Community. We hope to form a Community in each state and to continue to work both nationally and globally on rare disease issues.

To learn more about this organization, please visit there website here.

 

 

MoonShare is a nationwide giveback component of Sugarlands Distilling Co. that helps nonprofit organizations positively influence their communities through MoonShare grants, fundraisers, and donations.

 

In 2015, Sugarlands Distilling Co. donated $60,000 to nonprofit organizations across the country. Each month one organization was selected by the public to receive a $5,000 MoonShare Grant to put toward a charitable cause.

 

To view a full list of the Top 50 MooShare Finalists, please visit moonshare.org

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