YOU ARE NOT ALONE!
There are tens of thousands of families all over the world living satisfying, productive lives that also have this kidney disease. You can join our community and receive regular updates, news and event information by registering here:
LEARN YOUR GENETIC TYPE
Alport Syndrome is a genetic disease and there are several types. It is helpful to know your genetic type for treatment, to help identify at-risk family members, and for family planning considerations. No-charge or minimum-charge genetic testing may be available to you, Learn more on our Genetics page linked below.
An international group of medical experts created recommended guidelines for treatment. Our disease is rare, but you can empower yourself and your doctor by getting familiar with the guidelines. We’ve also created numerous tip sheets for patients/families with guidance from members of our Medical Advisory Committee.
THERE IS REASON TO BE HOPEFUL!
There is great reason to be hopeful about the future! Learn about medical research and clinical trials working towards better treatments and possible cures for Alport Syndrome. Two of the best ways patients can help with research is to enroll in ASF’s Alport Patient Registry and in our natural history study, NEPTUNE. Patients can learn more about ongoing research opportunities on our newly created webpage.