Foundation promotes research to fight rare kidney disease

March 2019 is Alport Syndrome Month — coinciding with National Kidney Month — to raise awareness of kidney disease and the benefits of organ donation.

Alport Syndrome is a rare genetic kidney disorder that causes damage to tiny kidney channels that filter urine.

The inherited disease affects one of every 50,000 newborns and is characterized by renal failure, hearing loss, and eye deformity.

Founded in 2007, the Alport Syndrome Foundation is a non-profit organization launched by a group of families affected by the disease and guided by a committee of renowned nephrologists.

The foundation was built on the past efforts of the late Dr. Curtis Atkin–who had Alport syndrome himself– of the University of Utah and the Hereditary Nephritis Foundation. The foundation aims to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy, and research to help conquer the disease.

ASF’s vision is to direct the majority of its resources to medical research, raise awareness of the patient and medical community and foster collaboration through alliances with international patient support groups, patient registries, and medical researchers throughout the world. ASF has connected more than 7,000 patients, families, physicians, and researchers in at least 75 countries.

On the Web: alportsyndrome.org.