The countdown is on for NORD’s 2015 Portraits of Courage

In less than one week, the rare disease community will gather for one of its biggest nights – NORD’s annual Portraits of Courage Gala. If you have not yet registered, there is still time.

This year’s honorees include Francis S. Collins, M.D., Ph.D., Director, National Institutes of Health; Margaret Hamburg, M.D., Former Commissioner, Food and Drug Administration; NORD’s first-ever Rare Disease Public Awareness Award, given to Cindy Abbott, a rare disease patient and only woman in the world to have climbed both Mount Everest and completed the Alaskan Iditarod; six Industry Innovators behind the novel new drugs approved last year; 10 of the most courageous and inspiring patients and caregivers of the year, nominated by the community; and more (below).

The evening will include a cocktail reception, silent auction and seated dinner followed by a champagne and dessert celebration, plus a musical performance by singer-songwriter Sonia Lee. The 2015 Portraits of Courage art gallery, NORD’s annual traveling art exhibit featuring portraits of patients, parents and caregivers, will debut at the event.

The 2015 Portraits of Courage Honorees are:

Abbey S. Meyers Leadership Award

The International Pemphigus & Pemphigoid Foundation
Industry Innovation Award

BioMarin Pharmaceutical Inc. – Vimizim (Mucopolysaccharidosis Type IVA, also known as Morquio A Syndrome)
BOEHRINGER-INGELHEIM Corporation USA – Ofev (Idiopathic Pulmonary Fibrosis)
Genzyme Corporation – Cerdelga (Gaucher Disease Type I)
Lundbeck – Northera (Neurogenic Orthostatic Hypotension)
Novartis Pharmaceuticals – Zykadia (Anaplastic Lymphoma Kinase-Positive Metastatic Non-Small Cell Lung Cancer)
Vanda Pharmaceuticals Inc. – Hetlioz (Non-24-Hour Sleep-Wake Disorder)
Lifetime Achievement Award

Francis S. Collins, M.D., Ph.D. – Director, National Institutes of Health
National Health Leadership Award

The Honorable Lamar Alexander (TN), U.S. Senate
The Honorable Robert Casey, Jr. (PA), U.S. Senate
Portraits of Courage Award

Devin Alvarez (Sprengel Deformity)
Emily Argersinger (Sturge-Weber Syndrome)
Laura Crandall (Sudden Unexplained Death in Childhood)
Anthony Ferrandino (Batten Disease)
Bailey Gribben (Neurofibromatosis)
Sophia Hanson (Lymphedema Praecox)
Savannah Hollis (Cavernous Angioma)
Glenn and Cara O’Neill (Sanfilippo Syndrome)
Yusuf Patel (Methylmelonic Acidemia)
Lori Sames (Giant Axonal Neuropathy)
Rare Disease Public Awareness Award

Cindy Abbott (Wegener’s Granulomatosis)
Special Recognition

Margaret A. Hamburg, M.D. – Former Commissioner, Food and Drug Administration

The Portraits of Courage Gala is NORD’s biggest fundraising event of the year. All proceeds raised support NORD’s mission as a nonprofit to provide education, advocacy, research and patient support on behalf of the 30 million Americans with rare diseases.

More Information & Ticket Registration

To learn more, register for tickets, or for sponsorship opportunities, please visit

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