In 1927, Dr. Cecil Alport published a paper in the British Medical Journal in which he discussed his study of several generations of a family with what earlier physicians had called “hereditary familial congenital haemorrhagic nephritis." So how did this condition come to be named after Dr. Alport?
Unburdened and empowered. Those are my 13-year-old’s words. That’s how he reports feeling after the Alport Family Meeting in Los Angeles. I encourage every family affected by this disease to attend one of the upcoming meetings. It exceeded our expectations.
Because Alport syndrome nearly always leads to kidney failure and often has other serious symptoms, such as severe hearing loss, receiving a diagnosis is often difficult. Meet two people who turned their diagnosis into an opportunity to help others cope with the challenges of living with Alport syndrome.
Patients with a diagnosis like Alport syndrome often feel helpless to impact the outcome of their own health. While there are some things patients cannot change, there are many things they can influence.
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.