June 10th was an emotional – but very educational – day for everyone who attended the Food and Drug Administration’s public meeting on Patient-Focused Drug Development for Inborn Errors of Metabolism. read more >
Biologic therapies have been lifesaving and life changing for the patients we represent – more than 30 million Americans with more than 7,000 rare diseases. Literally, hundreds of thousands of rare disease patients have found their lives bettered by biologics and we are collectively grateful to the innovators and companies that have made this possible. read more >
NORD’s Portraits of Courage Celebration on May 8, 2014, highlighted the many ways in which patients and caregivers display great dignity and grace in living with challenging rare diseases. Patients and families featured in the Portraits of Courage gallery providing an inspiring presence at the event.
We thank our sponsors and supporters who made it all possible, and extend congratulations to our honorees for their accomplishments. NORD will be displaying the Portraits of Courage gallery at other events throughout the year. View our list of sponsors and read the press release listing our honorees.
This guest blog was submitted by the Society for for Women’s Health Research and is being published in conjunction with National Women’s Health Week, which is May 11-17.
Autoimmune diseases (ADs) are conditions characterized by inflammatory responses from misdirected attacks by the immune system on the body’s organ systems. Currently, there are more than 80 ADs that have been identified, and they are the third most common major illness in the United States. These diseases can affect any part of the body, from the heart, to the brain, to the eyes and digestive tract. ADs affect roughly 7-10 percent of the U.S. population, and disproportionately affect women, who make up nearly 80 percent of patients with ADs. read more >
To Support Research and Gain a Better Understanding of VHL and other Forms of Cancer, Patients and Medical Experts Around the World will Share Critical Information in Search of a Cure! 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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