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Raising Awareness & Advocating for the 1 in 10 Americans living with a rare disease. Tax ID 45-3231740


The Rhode Island Rare Disease Foundation was founded in August of 2011, after my daughter had surgery on her spinal cord. My dauhgter, Olivia, has a rare disease called Hypomelanosis of Ito. She is 1 of 100 reported cases in the United States. We are a non-disease specific, state-based foundation. By connecting on a state level and encompassing all rare diseases we are able to build a strong rare disease community. Much of our work is done at the state level, but we also work to improve the lives of all people in the United States living with a rare disease. In 2012, we worked with 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 in to law in July, 2012. We have had so much success with the state-based model that we recently started working in Massachusetts. Our hopes are to create this model in every state to improve the lives of the 30 million Americans living with a rare disease. We are 30 million strong. It is time to hear about rare!!