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.
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My 7-year old was diagnosed with febrile ulceronecrotic Mucha-Habermann disease (FUMHD). He spent 40 days in the ICU and was treated with many different medications. He is now recovering. Where can I learn about new treatments for this condition? See answer
How does a person contract FUMHD? How is a person tested for FUMHD? If it is genetic, can other children of the same parents be tested for it? How can doctors ensure they have not wrongly diagnosed someone that has FUMHD (in my loved one FUMHD was confused with chicken pox)? At what point does the disease stop being PLEVA and become FUMHD? What are the signs and symptoms that someone has FUMHD? How do doctors determine whether or not the treatments being administered for FUMD are working? At what point should Methotrexate be used to treat FUMHD? When should MRI's and X-rays be used to look for disease affecting the interior? See answer