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)
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!
In 2006, Shane J. discovered he had a broken back, the cause of which was a medical mystery. At the same time, he was suddenly racked with severe muscle spasms and seizures. Shane endured a life of pain for 18 months until he was diagnosed with Stiff-Person Syndrome (SPS)–a rare neurological disorder. There is no cure and the cause is not known. The resilience, determination, and resolve of rare disease patients go unmatched. Working through intense pain, Shane fought back against his disease and broke through SPS barrier after barrier until he decided to fulfill a lifelong dream and run the Boston Marathon. read more >
CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program. read more >
I originally started writing this blog days before Boston Marathon 2013, and was planning to post it after returning home. I’m glad that I hadn’t posted it beforehand, because the terrible events at the finish line have magnified my admiration all the more for a particular group of heroes – two groups of individuals who formed one amazing team. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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