Rare Disease United Foundation
A Year in  Review 2013
Rhode Island Rare Disease Foundation

                                                                                                               


A Year in Review 2013

World Rare Disease Day 2013

Our World Rare Disease Day 2013 was held at the Crowne Plaza in Warwick, Rhode Island. Over 150 people came out to help raise awareness for rare diseases. There was great food, music and a magician. This event brings people together from all over the state who live with a rare disease. Special thanks to our rare disease heroes: Leanna Scaglione, Olivia Weltin and Emily Hawkins! 

DNA Day

On April 25th, 2013, DNA Day, the Manton Center for Orphan Disease Research held a launch party at Boston's Children's Hospital for the Massachusetts Rare Disease Community. Thank you to Meghan Towne from The Manton Center For Orphan Disease Research for organizing this wonderful event to kick-off our work in Massachusetts. We are very excited to be working in Massachusetts and look forward to creating communities in other states in New England in 2014.

Congressman Jim McGovern

In July, Sandi Carter Brown our Advocacy Coordinator, and I met with Congressman Jim McGovern. Congressman McGovern is a member of the bipartisan Rare Disease Congressional Caucus. The Rare Disease Congressional Caucus was created to help bring public and Congressional awareness to the unique needs of the rare disease community. Congressman McGovern is also working  with the Massachusetts Rare Disease Community to help people in Massachusetts living with a rare disease. Congressman McGovern cares about rare!

2nd Annual Care for Rare Silent Auction

Our 2nd Annual Care for Rare Silent Auction was held on September Friday the 13th. The event was Friday the 13th themed with plenty of open umbrellas, broken mirrors and black cats. The event was catered by Russell Morin catering. Music was provided by the Adam Ezra group. It was a magical night. Special thanks to the Adam Ezra Group for making this event so special!

Lens on Life

On November 16th, Rick Guidotti from Positive Exposure came to The Manton Center for Orphan Disease Research in Boston to photograph our rare kids. The event was a joint project with the Rare Disease United Foundation and The Manton Center for Rare Disease Research. Cambridge Biomarketing donated their many talents to make this event unforgettable. There was face painting, a photo booth, a music corner, crafts and plenty of great food. Rick used his amazing talent to photograph our beautiful rare kids. We are very grateful to Rick, Cambridge Biomarketing and The Manton Center for putting together an unforgettable day!

10th Annual Southern New England Women's Expo

Congressman Joe Kennedy

In November, Sandi and I met with Congressman Kennedy to discuss rare diseases and the many issues the rare disease community faces. As a result of our meeting, Congressman Kennedy will be joining the Rare Disease Congressional Caucus to add his voice on Capitol Hill. Congressman Kennedy cares about rare!

Advocating at Massachusetts State House

The Rare Disease United Foundation is honored to be working with some amazing people on two important bills that effect the rare disease community in Massachusetts: Specialty Tiers Bill (S 477) and Step Therapy Bill (S 439). Recently, Specialty Tiers Bill (S 477) was favorably reported out of the Joint Committee on Financial Services and sent to the Joint Committee on Health Care Financing.

U.S. Senator Markey's Swearing In Ceremony

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