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.
Got a Great Research Idea? ‘All of Us’ Wants to Hear It!
January 18, 2018
New NCATS Rare Diseases Research Video
December 27, 2017
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
Targeting the Oncogenic Drivers of Rhabdomyosarcoma Friday, April 24, 2015
Location: Bethesda, MD
Anticipated goals: Agreement and Update on: 1.) Collaboration to validate prognostic markers in rhabdomyosarcoma. 2.) Plan for genomic investigation for every sample entered on national/international trials. 3.) Collaboration for data unification and sharing of samples. 4. Plan for clinical trials of targeted agents in rhabdomyosarcoma.
Contact: Dr. Javed Khan,(301) 480-0314,email@example.com
Co-funding Institute(s): National Cancer Institute, Office of Rare Diseases Research
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