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Apr. 13, 2015

TOPIC: Uncategorized

Announcing the 2015 Portraits of Courage Honorees

Posted by Jennifer Huron
2015 Portraits of Courage Gala

2015 Portraits of Courage Gala

On May 19, on one of the rare disease community’s biggest nights, we will honor the patients, leaders and innovators who are moving the community forward at NORD’s annual Portraits of Courage Gala in Washington, D.C.  More than 500 guests are expected to attend.  Register here.

The 2015 honorees include:

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 Honorees
Devin Alvarez (Sprengel’s 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 Type A)
Yusuf Patel (Methyl Melonic 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

In addition to a cocktail reception, silent auction and seated dinner, the 2015 Portraits of Courage Gala will feature a post-event champagne and dessert celebration and musical performance by singer-songwriter Sonia Lee.

This is NORD’s biggest fundraising event of the year and all proceeds support our mission of providing education, advocacy, patient support and research for the 30 million Americans with rare diseases.

To learn more, register for tickets, or for sponsorship opportunities, please visit http://www.rarediseases.org/news-events/gala-2015.  See you there!

– See more at: http://blog.rarediseases.org/announcing-the-2015-portraits-of-courage-honorees/#sthash.ICPtUNTv.dpuf

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