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Celebrating the 30th Anniversary of NORD and the Orphan Drug Act!

May 14, 2013 - Images from NORD's 30th Anniversary Celebration

Heroes of the rare disease community joined future advocates on the stage at the glittering 30thAnniversary Celebration of the National Organization for Rare Disorders (NORD) on May 14th at the Mellon Auditorium in Washington DC.

Before an audience of 500 people, Representative Henry Waxman (CA) hailed Abbey Meyers and other patient advocates for their leadership and vision in promoting federal incentives to encourage the development of treatments for people with rare diseases.  Rep. Waxman, the author and chief sponsor of the Orphan Drug Act, was one of the honorees for the event, which was a highlight of NORD’s year-long 30th Anniversary observance.

On an evening that many are describing as “magical”, three young representatives of the next generation of rare disease patient advocates also spoke.  Megan Barron, a recent Duke University graduate; 11-year-old Brooke Foster; and 8-year-old Ian Brown talked about the rare diseases of particular concern to them – epidermolysis bullosa, mastocytosis, and Langerhans cell histiocytosis – and thanked the rare disease heroes for the work they have done on behalf of patients and their families.

In addition, by three patients and the parent of a patient -- Kathryn Bundy, Christian Jacobs, Reina Weiner, and MaryBeth Krummenacker – presented awards to senior officials from four companies for innovative products approved by the Food and Drug Administration in 2012.

U.S. Deputy Surgeon General Boris Lushniak, MD, served as guest emcee, assisted by longtime NORD adviser and board member Frank Sasinowski.  Entertainment was provided by the Howard University Jazz Ensemble and American Idol finalist Siobhan Magnus.

NORD President Peter L. Saltonstall and President Emeritus Abbey S. Meyers

Rep. Henry Waxman, the author and primary sponsor of the Orphan Drug Act

Heroes honored for their pioneering work were Abbey Meyers, Dr. Marlene Haffer, Lars-Uno Larsson, Dr. Jess Thoene and Dr. Stephen Groft

Susan Hattan (representing Sen. Nancy Kassebaum), Rep. Henry Waxman, and William Corr, honored for leadership related to the Orphan Drug Act

Guest Emcee Deputy Surgeon General Dr. Boris Lushniak

Frank Sasinowski, recipient of a Lifetime Achievement Award, with his son Tom

Representing patients for whom orphan products were approved in 2012: Christian Jacobs, Reina Weiner, Kathryn Bundy, and Marybeth Krummenacker

Guests representing the Pulmonary Hypertension Association and Hermansky-Pudlack community

Young advocates Megan Barron, Brooke Foster and Ian Brown

Peter L. Saltonstall of NORD, Dr. Gayatri Rao of FDA and Dr. Stephen Groft of NIH

Abbey Meyers, Peter L. Saltonstall, and Representative Henry Waxman

Brooke Foster and honoree Dr. Marlene Haffner

Young advocate Ian Brown and his mother, Tracy

The Mellon Auditorium

Honoree Lars-Uno Larsson

The Howard University Jazz Ensemble

Four companies (Aegerion, NPS, Onyx and Sigma-Tau) were honored for products brought to market in 2012.

American Idol finalist Siobhan Magnus

Pam Gavin of NORD with patient presenter Megan Barron and Megan's mother, Betsy Ward

NORD President Emeritus Abbey Meyers

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