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.
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
What are the early signs of cancer of the vulva if my sister has had leukoplakia there for 12 years? Is biopsy necessary? Is there any medication for treatment of non-cancerous vulvar leukoplakia? See answer
My sister has had vulvar leukoplakia for 12 years. The problem remains stable. The infection area does not expand and is difficult to recognize, as it is only 1 cm. Sometimes the area is itching. Could you let us know about treatment methods for this disease? Is surgery needed? Is the disease getting serious? See answer