National Organization for Rare Disorders (NORD)® to Honor Rare Disease Patients, Leaders and Innovators at 2015 Portraits of Courage Gala on May 19

WASHINGTON, April 10, 2015 /PRNewswire-USNewswire/ -- On May 19, the National Organization for Rare Disorders (NORD)®, the nation's leading nonprofit organization dedicated to helping patients with rare diseases, will honor the patients, leaders and innovators who are moving the rare disease community forward at its annual Portraits of Courage Gala in Washington, D.C.

The funds raised will support the organization's mission of providing education, advocacy, patient support and research for the 30 million Americans with rare diseases. More than 500 guests are expected to attend.

"We look forward to celebrating the community's accomplishments and the people and organizations that made them possible," said Peter L. Saltonstall, president and CEO of NORD.  "The rare disease community is exemplified by remarkable courage and determination."

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 Award

• 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. 

Current sponsors include Genzyme Corporation, BioMarin Pharmaceutical Inc., Genentech, Aegerion Pharmaceuticals, Lundbeck, Onyx Pharmaceuticals, Shire, Alexion Pharmaceuticals, Alnylam Pharmaceuticals Inc., Baxter International Inc., CSL Bering, GSK (GlaxoSmithKline), Hyperion Therapeutics, Inc., Vanda Pharmaceuticals Inc., Cytokinetics, Inc., Dohmen Life Science Services, Stealth BioTherapeutics Inc.  Rare Disease Report is a media partner for the event.

A rare disease is defined as a disease that affects fewer than 200,000 in the U.S.  There are 7,000 rare diseases that affect an estimated 30 million Americans, or 1 in every 10 people.  Two-thirds of these patients are children.  Many rare diseases are chronic and life-threatening and less than 5 percent have a medical treatment that has been approved by the FDA.

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

About National Organization for Rare Disorders (NORD)^®

Established in 1983, the National Organization for Rare Disorders (NORD)^® is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S.  NORD is committed to the identification, treatment and cure of all 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD provides programs of advocacy, education, research and patient/family services to improve the lives of all people living with rare diseases. NORD represents more than 220 disease-specific member organizations and partners with many other organizations in specific causes of importance to the rare disease patient community. Follow NORD at www.rarediseases.org/ and on Twitter at @RareDiseases.

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SOURCE National Organization for Rare Disorders (NORD)

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