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Rare Disease United Foundation Overview
Our mission is to build a strong rare disease community in Rhode Island, to provide support and information to our families, to raise awareness and to advocate for our families.
In our first year, the RIRDF has done the following in support of the rare disease community:
-Our World Rare Disease Day 2012 was attended by 150 people and live-streamed around the world.
-We have raised awareness for the community through a front page article in the Sunday Edition of the Providence Journal and a segment on WJAR Health Check.
-We have advocated for the community by speaking on bills that would affect the rare disease community in RI
-We are a member of the Rhode Island Health Advocacy Forum
-We worked with Senator Sheldon Whitehouse on the EXPERRT Act which was signed into law in July 2012.
-Our ist Annual Care for Rare Silent Auction not only raised money so we can continue to serve the rare disease community, but will be featured in the December 2012 issue of Rhode Island Monthly.
-We are currently working with local schools to introduce rare diseases into the curriculum.
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Rare Disease United Foundation is an effective and efficient patient advocacy organization. Their passion for making a difference is evident through their proactive outreach to patients and families as well as their powerful advocacy at the state level. They have built credibility at the state ...
Being a parent of a child with a rare disorder is extremely challenging! It is just one of the many roles so many of us have been dealing with all alone. We are fortunate to have an online family support network for our child's condition but this can get pretty lonely as families are so far away. ...
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I am proud to be the first rare disease survivor that serves as President/Chair of the Rare Disease United Foundation's Board of Directors. I originally came to this organization through its "Care for Rare" survivorship support group meet ups. My goal was to meet people that are going through ...
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