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.
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.
2016 Million Dollar Bike Ride Pilot Grant Program
August 15, 2016
International Meeting on Fibrous Dysplasia of Bone/McCune-Albright Syndrome: Best Clinical Practice and Future Research
Sunday, October 3, 2010 -
Tuesday, October 5, 2010
Location: NIH, Natcher Conference Center, Bethesda, Maryland
Description: The clinical scientists presented the results of their investigations and experience in the care of patients with fibrous dysplasia (FD) to the entire group for discussion and comment. At the end of the conference they came together in subgroups to define what is commonly held to be the best clinical practice. The scientists likewise presented their data for discussion and comment and came together to generate a roadmap for the focus of current and future research. It was also a goal to create greater collaboration between and among the clinical and basic scientists and the patient advocacy groups. One goal of the latter interaction was to promote the creation of a patient registry and tissue bank that will allow for the collection of standardized data on an international basis and make invaluable clinical material available to basic scientists.
Contact: Michael T. Collins, MD, firstname.lastname@example.org email@example.com
Co-funding Institute(s): National Institute of Dental and Craniofacial Research, Office of Rare Diseases Research
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
I am interested in reading the most up-to-date research on the use of bisphosphonate therapy in treating adult PFD. What I have found in my search so far is that while it does seem to treat pain associated with PFD, it doesn't actually stop the progression of the condition. Also, I understand that long-term (over 3 years) use of bisphosphonates actually makes bones subject to fracture. So I was just looking for some answers. See answer
My one year old daughter has been diagnosed with fibrous dysplasia (FD). FD has been found on her left leg in both her tibia and fibula bones. Is there any cure for this condition? See answer
I would like to learn more about fibrous dysplasia, particularly of the skull. Can you help? See answer