CONNECT ON FACEBOOK
The Alport Syndrome Facebook Support Group page is 2,000+ patients strong, 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.
CONNECT WITH OTHER FAMILIES
Annual family meetings bring together patients, families and medical experts for a weekend of learning and socializing with others who share similar experiences. Connecting 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. Information about our family meetings.
Patient Connection Network
Our Patient Connection Network helps you build a personal network of support with other Alport patients. In our rare disease community, it can feel like we’re alone. ASF is in touch with thousands of Alport patients. You can request to get connected with a trained patient ambassador to turn to as a resource, or apply to be trained as a patient ambassador to assist others.
SEARCH THE ASF SITE
Use the search function to check out our website’s resources on treatment guidelines, no-charge genetic testing for patients in the U.S., information 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.