Although one altered copy of a gene in each
Learn more orphan products.
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.
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 grandfather just recently found out he has polycystic kidney disease, and I am curious to know if I have it also. I am 20 years old and have experienced some symptoms. What is the best way to go about testing for this condition? What kinds of tests do they run? See answer
I inherited autosomal dominant polycystic kidney disease (ADPKD) from my mother. Over the past two years I have had two CT scans which show that the condition has not changed. One side of my kidney is very large and I am currently taking medicine for high blood pressure. I am worried because I have three children. What can I do to manage my condition? See answer
I am curious if my fiance who has inherited polycystic disease from his mother will follow her patterns and symptoms that she has faced with this disease. In autosomal dominant polycystic kidney disease (ADPKD), do the symptoms and severity of symptoms tend to be the same among affected family members (e.g., would a mother and her son with ADPKD be similarly affected)? See answer
My brother was been recently diagnosed with autosomal dominant polycystic kidney disease (ADPKD). I am interested in testing to determine if I will go on to develop symptoms in the future. What are symptoms of ADPKD? How is it diagnosed? What influences the age at which symptoms begin to appear? See answer