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.
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.
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.
Interdisciplinary Workshop on Vascular Anomalies Associated with Coagulopathies Thursday, October 6, 2011 -
Friday, October 7, 2011
Location: Crowne Plaza Milwaukee, Wauwatosa , Wisconsin
Description: Our long-term goal is the improvement of care for infants and children affected by the rare vascular tumors, KHE/KMP and MLT. The overall goal of this workshop is to provide an open forum for an interdisciplinary team of expert clinicians and investigators to accelerate the development of guidelines of care and foster both clinical and basic science research in this field.
Contact: Theresa Smith, NIAMS(301) email@example.com
Co-funding Institute(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases, Office of Rare Diseases Research
Overcoming Barriers to International Clinical Trials for Rare Cancers
Friday, December 10, 2010
Location: Bethesda, Maryland
Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
Contact: Jack Welch, M.D., Ph.D., firstname.lastname@example.org@nih.gov
Co-funding Institute(s): National Cancer Institute, Office of Rare Diseases Research