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Apr. 12, 2018

TOPIC: Advocacy, Events, Featured News

NORD Shares News on 35th Anniversary Celebration Presenting the Rare Impact Awards

Posted by Laura Mullen

Washington, D.C., April 12, 2018—The National Organization for Rare Disorders (NORD) has announced the latest news regarding the upcoming 35th Anniversary Celebration presenting the Rare Impact Awards on May 17 in Washington, D.C.

 

Master of Ceremonies, Patricia Richardson

Emmy Award nominated actress Patricia Richardson will join us as our Master of Ceremonies. Patricia has long been part of the NORD family, having hosted several events over the years as well as contributing a public service announcement, engaging as an advocate on social media, and volunteering for CurePSP.

 

Rare Impact Award Honoree, The Honorable Frank Pallone

Congressman Frank Pallone (R-NJ) has recently been announced as a 2018 Rare Impact Award honoree. Congressman Pallone represents New Jersey’s Sixth Congressional District. Throughout his tenure in Congress, his legislative accomplishments have been geared to the protection and restoration of environmental resources and making health care more affordable and accessible.

 

Performing Artist, Michael Smedley

The evening will include a special performance at the piano by the talented Michael Smedley, who lost his sight due to CRB1 retinal disease, a rare genetic degenerative disease. Michael is the teenaged son of Kristin Smedley, Pennsylvania Ambassador for the Rare Action Network, who heads up the Curing Retinal Blindness Foundation on behalf of those living with CRB1 retinal disease, including her two sons.

 

The 2018 event is presented with support from benefactor sponsors Sanofi Genzyme and Shire, gold sponsors Alexion Pharmaceuticals, CSL Behring, GlaxoSmithKline, and Novartis, silver sponsors Alnylam, Amicus Therapeutics, Dohmen, Foundation Medicine, Horizon, Invitae, Sarepta, Spark Therapeutics, Ultragenyx Pharmaceutical, and Vertex Pharmaceuticals Worldwide, and bronze sponsors Achillion, Asklepion, Avexis, Hyman, Phelps & McNamara, P.C., Incyte, Insmed, Recordati Rare Diseases, Retrophin, Selecta Bio, Sobi, and Stealth Biotherapeutics.

 

To purchase tickets, visit rareimpact.org/awards.

 

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