I used to think that as a patient I had no power to effect change for my family and others with Alport syndrome – that we had to endure the recurring cycle of disease, generation after generation. I now know that we, as patients, play a pivotal role in changing the course of the disease and our actions will have a tremendous impact on our future.
Pregnant women with Alport syndrome should be monitored closely and partner with their Nephrology and OB/GYN doctors for the best care during their pregnancy. ASF asked Dr. Michelle Rheault, Co-Director of the Alport syndrome Treatments and Outcomes Registry (ASTOR), to address some common concerns for pregnant women with Alport syndrome.
This is the last of three articles this month on Alport syndrome genetics. This article focuses on the advances in genetic testing and how this new technology may affect the understanding of Alport syndrome.
This is the second of three articles this month that will provide an overview of what we know about the three genetic types of Alport syndrome, advances in genetic testing and how these advances may affect the understanding of Alport syndrome.
This is the first of three articles this month that will provide an overview of what we know about the three genetic types of Alport syndrome, advances in genetic testing and how these advances may affect the understanding of Alport syndrome.
Skin cancer has a life-long exposure rate, so the best course of action is to take preventative measures as early in life as possible. Kidney transplant recipients are especially susceptible to skin cancer due to the immunosuppressant drugs they take to combat organ rejection.
Have you been newly diagnosed with Alport syndrome? Are you dealing with kidney failure? As a patient community, we understand how overwhelming and difficult it is to deal with these challenges, along with the uncertainty of the future.
The Alport syndrome Foundation (ASF), the Pedersen Family and the Kidney Foundation of Canada (KFOC) are pleased to announce that they have jointly awarded research funding for two projects on Alport syndrome.