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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I have a 7-year-old patient diagnosed with PLEVA by skin biopsy. He has a chronic and relapsing course and we are trying to find more information for the family regarding this condition, its outcomes, and long-term complications. See answer
How often does pityriasis lichenoides et varioliformis acuta turn into something more serious? See answer
My 13-year-old son was recently diagnosed with pityriasis lichenoides et varioliformis acuta (PLEVA). Our local physicians do not know much about this condition and have not been very helpful in providing us with treatments. How is this condition treated? Where can I learn about the most current treatments? Are there doctors or researchers who specialize in this condition? See answer
I have been diagnosed with Mucha-Haberman disease. I don't know how I contracted this disease. For a couple of years, I was very sick and couldn't seem to get well. Now my symptoms flare up occasionally but I have blisters all of the time. What causes this condition? How is it treated? See answer
I was diagnosed with Mucha-Habermann disease six months ago. I have tried many different treatments, but nothing has made a difference. Can you provide information on treatments for this condition? See answer