National Organization for Rare Disorders Submits Comments in Response to Congressional 21st Century Cures Initiative “Call to Action”
The National Organization for Rare Disorders (NORD) has submitted comments to the Congressional 21st Century Cures initiative outlining nine steps to promote the development of treatments and cures for the 30 million Americans with rare diseases. 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.
Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD), was one of five individuals who testified on Tuesday before the U.S. House Energy and Commerce Health Subcommittee on advancing the development of treatments for Americans with unmet medical needs. read more >
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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