Patient Support and Inspiration

Alport Foundation of Australia
www.alport.org.au
The Alport Foundation of Australia is a non profit organization formed in 2008. The goals of this Foundation are to support Australian patients with Alport Syndrome and their families; to support quality research which provides a better outcome for those with Alport Syndrome and their families; and to raise awareness of Alport Syndrome in Australia.

Alport Support Group – Germany
www.alport-selbsthilfe.de
This is a link to the website of the Alport support group of Germany.

Alport Syndrome.ca
www.alportsyndrome.ca
This website is intended to provide support for Alport Syndrome patients and families across Canada and help raise awareness of Alport Syndrome.

Alport Syndrome Hope for the Cure Foundation
http://www.hopeforthecure.org/
The mission of the Alport Syndrome Hope for the Cure Foundation is to raise awareness of Alport Syndrome and other chronic kidney disease; provide support to families affected by Alport Syndrome and raise money to help fund diagnostic testing and gene therapy in hope for a cure.

Delphi Forums
www.forums.delphiforums.com
This website contains a forum that was originally developed at the University of Utah. When the University of Utah discontinued maintenance of the Alport Syndrome Home Page, the forum was migrated here to preserve the historical “chat” information that was part of that original website. The forum itself has discussions since 1998 between families affected by Alport Syndrome. One of the goals of Alport Syndrome Foundation is to build on this historical support by providing a centralized place for information about Alport Syndrome and discussion among affected families.

Renal Support Network
www.rsnhope.org
The Renal Support Network is an organization that provides non-medical services to those affected by chronic kidney disease. RSN strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them (and their family members) to take control of the course and management of their disease.

John F. Martin Website
www.johnfmartin.net
This site chronicles a photojournalist’s journey from diagnosis of Alport’s Syndrome through dialysis and transplant. The site contains many graphic photos of medical procedures and it is not suitable for all ages.

Kidney Steps
www.kidneysteps.com
Kidney Steps present a 5-step program to help you better your odds of avoiding and surviving kidney disease. The website was created by an Alport Syndrome patient.