PATIENT RESOURCES

Our staff members are affected by Alport syndrome and understand your need to find resources. Reach out by email or phone. Typically you’ll receive a response within 24 hours.

Contact Info
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The Alport Syndrome Facebook Support Group page is 3,500+ patients strong (as of April 2022), and moderated by experienced and knowledgeable patient ambassadors and staff. This is a remarkable place to ask questions, receive valuable feedback, and learn from shared experiences. Request to join today.

Use the search function to check out our website’s resources including treatment, and genetics, and support related to hearing loss, the renal diet, and much more. If you have suggestions for additional content for this site, be sure to contact us.

Read Our Patient Guide

Read Our Family Planning Guide

Getting involved in raising awareness about Alport syndrome and raising funds for research can be empowering! Learn about ways you can amplify our voice and support the entire Alport community of patients and families.

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Annual Alport Connect meetings bring together patients, families and medical experts for a weekend of learning and socializing with others who share similar experiences. Connecting virtually/in person with other patient families, getting your questions answered by medical experts, empowering yourself with knowledge and creating a network of support can be the best gift you give yourself and your family.

Annual Meetings Information