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 3,900+ patients strong (as of March 2023),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, eye abnormalities, the renal diet, and much more. If you have suggestions for additional content for this site, be sure to contact us.

View Educational Videos

Read Our Patient Guide

Read Our Family Planning Guide

Read Our Medications Guide for Adult Patients

Read Our Kidney Transplant Guide

View Our First Pediatric Nephrology Appointment Tips Sheet

View Our Tips for Maximizing Pediatric Nephrology Appointments

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.

JOIN OUR EFFORTS AS A VOLUNTEER

REGISTER AS A MEMBER OF THE ASF COMMUNITY

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.

Additionally, ASF host frequent virtual Direct Connect meetings throughout the year. These free meetings are topic-based and require pre-registration. Learn more by following the link below.

Annual Meetings Information

Virtual Direct Connect Meetings