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. Suggest an organization to add.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
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.
8th International Eosinophil Society’s Biennial Symposium
Saturday, July 13, 2013 -
Wednesday, July 17, 2013
Location: Oxford, England
Description: IES Symposium organizers’ central goal is to provide a highly interactive, interdisciplinary forum for scientific exchange and collaboration amongst junior and senior scientists in the fields of allergy, immunology, hematology, and cancer in relation to the role of the eosinophil in health and disease.
Contact: Michael Minnicozzi, Ph.D., (301) email@example.com
Co-funding Institute(s): National Institute of Allergy and Infectious Diseases, Office of Rare Diseases Research
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I was diagnosed with eosinophilic cystitis. My doctor put me on steroids along with Allegra. I have been using these medications for five weeks now, and I see no signs of improvement. However, the side effects of the steroids are becoming too much for me. Is it likely that I can be cured of this disease? See answer