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Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Undiagnosed Day is April 29th
April 19, 2017
Hypoxic Ischemic Encephalopathy: Opportunities and Challenges
Monday, August 9, 2010 -
Tuesday, August 10, 2010
Location: Pooks Hill Marriott, Bethesda, MD
Description: The goals of this meeting were to review the current evidence for care practices and define gaps for which knowledge regarding care is lacking. It was hoped that information (or lack thereof) presented at this meeting would lead to new initiatives and advancement of knowledge and care in the field.
Contact: Rosemary D. Higgins, M.D., email@example.com@mail.nih.gov
Co-funding Institute(s): National Institute of Child Health and Human Development, Office of Rare Diseases Research
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