Alport Syndrome Foundation Inc.

The Alport Syndrome Foundation Inc. is a U.S.-based non-profit organization dedicated to supporting individuals affected by Alport syndrome, a rare genetic kidney disease. The foundation is led by and composed of patients and families impacted by this condition.

Mission

The mission of Alport Syndrome Foundation Inc. is to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy, and direct investment in research. This multi-faceted approach aims to address the complex needs of individuals with Alport syndrome and their families[1][3].

Activities

• Education and Empowerment: The organization provides educational resources to help patients, family members, and caregivers understand Alport syndrome, facilitating informed decision-making and self-advocacy.
• Advocacy: By advocating for the needs of the Alport syndrome community, the foundation seeks to raise awareness and influence policy and research priorities.
• Research Investment: The foundation invests in scientific research aimed at understanding and treating Alport syndrome. This includes supporting clinical trials and studies that explore potential treatments and management strategies[1][3].

Alport Syndrome Overview

Alport syndrome is a genetic disorder characterized by glomerulonephritis, end-stage renal disease, and hearing loss. It can also affect the eyes, though vision is rarely impacted. The syndrome results from mutations in genes involved in type IV collagen production, which is crucial for the proper functioning of various tissues, including those in the kidneys, ears, and eyes[2].

Structure and Membership

The Alport Syndrome Foundation Inc. is advised by a Medical Advisory Group of clinicians with expertise in Alport syndrome, as well as a Scientific Advisory Research Network comprising researchers globally. The organization offers free membership and resources to its members, who number over 8,000 as of recent reports[3].

[1] https://www.knowrare.com/blog-v2/alport-syndrome-foundation [2] https://en.wikipedia.org/wiki/Alport_syndrome [3] https://rarediseases.org/organizations/alport-syndrome-foundation/ [4] https://alportsyndrome.org [5] https://www.guidestar.org/profile/20-8237159