The Norrie Community

Norrie Disease Association (NDA)

This is a non-profit organization that was founded by parents at a time when little was known about the disorder. Its mission, from its inception, has been to provide support and information to families, and to raise public awareness among medical and educational communities.

Every once in three years, the NDA organizes an international conference in Boston, Massachusetts featuring speeches by leading medical experts; vocational, motivational, and technological presentations; genetic counseling and testing; and specialized workshops for individuals with Norrie disease, their parents, and their siblings.

Support group on yahoo

The Norrie Disease Association (NDA) has roots in the online support network called the Norrie Yahoo Group, which was created in 1998 by Michael Kosior (1974-2012). Kosior, who had Norrie disease, envisioned a forum where individuals and families affected by Norrie Disease and researchers could freely interact. The correspondence has grown to include topics from complex medical issues to general advice for daily life, and has created an unrivaled support network. The listserv participation rate is high, especially considering the rarity of the disease.


Norrie Disease Foundation

The Norrie Disease Foundation aims to:

• Further research into all aspects of Norrie disease
• Support and Strengthen the Norrie Community
• Raise awareness of Norrie Disease 
• Campaign for a brighter future for families affected by Norrie disease

Support group on facebook

The Norrie Facebook group is a private group which has around 140 members globally. It offers a fantastic chance to hear and share experiences and offers support and friendship. There is pretty much someone on it 24/7.