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.
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.
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.
Got a Great Research Idea? ‘All of Us’ Wants to Hear It!
January 18, 2018
New NCATS Rare Diseases Research Video
December 27, 2017
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
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've been suffering for 4 years, and now this disease has become very painful. What is the treatment? How much time does it take to recover, and what should be my diet? Do smoking and liquor escalate this disease? See answer
I was diagnosed with morphea on my trunk in 1987. Treatment with penicillamine and Accutane was unsuccessful. After about 5 years, the condition went into remission. About seven years later the morphea returned, this time on my lower legs and feet. It has been treated with various medications and treatments without success. My doctors have told me that there is nothing that can be done. What treatments are recommended for morphea? See answer
Can a mother pass morphea on to her child if it is active during the pregnancy? See answer
What is morphea and atrophoderma of Pierini and Pasini? How is atrophoderma of Pierini and Pasini treated? See answer
I was diagnosed with generalized morphea 4 years ago. Although it appears to be fading away, the pain has increased. Could this indicate that I am developing scleroderma inside my organs? How would I tell if this is the case? Can I possibly die from either of these diseases? See answer