OUR STAFF ARE HERE FOR YOU
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.
CONNECT ON FACEBOOK
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.
EDUCATIONAL GUIDES, VIDEOS, & WEBSITE RESOURCES
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.
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
JOIN OUR EFFORTS
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
CONNECT WITH OTHER PATIENTS, FAMILIES
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.