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.
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.
Outcomes Database in Hematopoietic Cell Transplantation and Cellular Therapy for Autoimmune Diseases
Friday, April 19, 2013 -
Saturday, April 20, 2013
Location: Froedtert and Medical College of Wisconsin, Milwaukee, WI
Description: The aim of this NIH workshop is to break the stalemate and facilitate interdisciplinary collaboration by creating functional clinical research teams on the national level who can then create a momentum for progress in this area of substantial unmet need and high promise. The CIBMTR infrastructure, which is currently cancer-focused, can be easily adapted to collect AID-specific data
Contact: Dr. Steven Pavletic(301) 402-4899
Co-funding Institute(s): National Cancer Institute, Office of Rare Diseases Research