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.
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.
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
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