Who We Are
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.
How We Were Formed
My name is Patricia Weltin. My daughter, Olivia, was diagnosed with the rare disease Hypermelanosis of Ito(HI) at the age of three. Growing up, Olivia was always sick. She had many surgeries for acute sinusitis. Olivia’s health improved after it was discovered her issues were from severe allergies and she was treated accordingly. She went on to do well in school and even play Division I Doubles tennis. Shortly after her 18th birthday, Olivia’s teeth started falling out and she was hospitalized for unspecified back pain. It was discovered, by a radiologist, that Olivia had Chiari I malformation. After spending many, many hours researching Olivia’s symptoms, I found the answer; Olivia had Ehlers-Danlos Syndrome(EDS) a ‘rare’ly diagnosed connective tissue disorder. Since then, both Olivia and my youngest daughter, Hana, have been diagnosed with Ehlers-Danlos Syndrome and its many comorbidities. There appears to be a link between HI and EDS and research is currently underway to find that link. Living the rare life left me acutely aware of the many unmet needs of the rare disease community. I formed Rhode Island Rare Disease Foundation in the hopes of helping other Rhode Islanders on the same journey. In 2011, we had our first Rare Disease Day event which was attended by 150 people. Shortly after, we worked with U.S. Senator Sheldon Whitehouse on the EXPERRT Act, which allowed the FDA to bring in outside experts when reviewing rare disease treatments. We recognized the importance of working by state and started working in Massachusetts and other states, the first rare disease advocacy organization to recognize and take on rare disease issues on a state-level. We conceived of and authored legislation for a Rare Disease Advisory Council. This legislation has passed in several states and we hope to build on that momentum to bring it to each state. Rhode Island Rare Disease Foundation became Rare Disease United Foundation, the authentic voice of the rare disease community. We are innovators in the rare disease space and have used our own rare disease journeys to positively affect change.
A Personal Note
Our accomplishments are about who we are. We are moms with rare kids. We are rare patients. We have felt your pain and heartache. We have cried as you have cried. We have shared your frustrations. We are on the same journey. Our success truly lies in our passion and our love for our children and yours. We will continue on this journey until all of our loved ones no longer have unmet medical needs and until there are treatments for all rare diseases. We ARE the rare disease community. Rare Diseases. Be United!