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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

International Lesch-Nyhan Disease Association

a/k/a: ILNDA


11402 Ferndale St.
Philadelphia, PA 19116





800 Number





The International Lesch-Nyhan Disease Association is a non-profit, self-help organization dedicated to providing information and support to families of children diagnosed with Lesch-Nyhan disease. Lesch-Nyhan disease is a rare inborn error of purine metabolism characterized by the absence of the enzyme HPRT. Symptoms include impaired kidney function, joint pain, muscle weakness, neurological impairment, and self-mutilating behavior such as lip and finger biting and/or head banging. Established in 1994, the International Lesch-Nyhan Disease Association promotes awareness of the disease among healthcare professionals and the general public, and engages in patient advocacy. It also enables affected families to exchange information, support, and resources and offers a variety of informational and support information through its database, directory, article reprints, and brochures.

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