Advocates for Rare Diseases Such as Mesothelioma to be Honored by NORD
The National Organization for Rare Disorders (NORD) has announced the honorees for their Rare Disease Innovator Awards. NORD will celebrate the pioneering achievements of individuals, organizations, companies in public policy and others for improving the lives of people with rare diseases at the annual NORD Partners in Progress Celebration on Tuesday, May 17, in Washington, DC. There are nearly 7,000 rare diseases affecting almost one in 10 Americans. Some of the conditions designated as rare by the National Institutes of Health include mesothelioma, ulcerative colitis, Alzheimer’s disease, colorectal cancer, prostate cancer and close to 7,000 other cancers and diseases.
Due to the relative rarity of mesothelioma, a rare form of cancer caused by asbestos exposure, and other orphan diseases, managing the disease and trying to find appropriate treatment can be overwhelming to the patients and their families. NORD offers vital services to the public through providing information about diseases, referrals to patient organizations, research grants and fellowships, advocacy for the rare-disease community, and Medication Assistance Programs that help needy patients obtain certain drugs they could not otherwise afford.
Some of the NORD awards include:
National Health Leadership Award – The Honorable Joseph Crowley (NY-7) and The Honorable Leonard Lance (NJ-7) for co-chairing the new Rare Disease Congressional Caucus.
Power of Partnership Award – Genzyme Boston Marathon Team. This award will be presented for the first time for outstanding acts of volunteerism demonstrating partnership with the rare disease patient community.
Partners In Progress Award – The MILES Research Team led by Frank McCormack, MD, and The LAM Foundation for demonstrating how effective partnership between scientific researchers and the patient community can drive progress in better understanding of rare diseases and possible treatments.
A disease is designated as an orphan disease when less than 200,000 Americans are affected by the disease at any given time. Mesothelioma is responsible for approximately 3,000 new cases of cancer each year in the United States. Although there is no cure for mesothelioma, it can be treated with varying degrees of success through the use of surgical procedures, chemotherapy and radiation.
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
NORD Honors Rare Disease Advocates