Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s 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.
NIDDK Workshop on Total Pancreatectomy with Islet Auto-Transplantation (TP-IAT): Gaps, Needs, and Opportunities Wednesday, July 23, 2014
Location: University of Pittsburgh, Pittsburgh, PA
Description: The results and conclusions from this workshop will be published as a conference summary for widest possible dissemination to the fields involved, and will be used to inform the development of new research initiatives by DEM and DDN/NIDDK.
Contact: Dana K. Anderson, M.D.,(301) 594-8879,firstname.lastname@example.org
Co-funding Institute(s): National Institute of Diabetes and Digestive and Kidney Diseases, Office of Rare Diseases Research
Autoinflammation 2013: The Seventh International Congress of FMF and Autoinflammatory Diseases Wednesday, May 22, 2013 -
Sunday, May 26, 2013
Location: Lausanne, Switzerland
Description: The goals of this meeting include the exchange of clinical and scientific information regarding the autoinflammatory diseases. This is likely to result in improvements in the diagnosis and treatment of these diseases. Past Congresses have resulted in new scientific collaborations, development of registries for patients with specific autoinflammatory disorders, and the initiation of multicenter clinical trials.
Contact: Daniel Kastner, M.D., Ph.D., email@example.com
Co-funding Institute(s): National Human Genome Research Institute, Office of Rare Diseases Research
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