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PATIENT RESOURCES

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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.

Contact Info
Call Us
Email Us

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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.

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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.

Family Meetings Information

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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.

Connect to a Patient Ambassador
Become a Patient Ambassador

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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.

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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
REGISTER AS A MEMBER

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