Other Genetic and Rare Disease Support Groups

USA

Hide & Seek Foundation

A non-profit foundation created by parents, scientists, business leaders and philanthropists, in order to dramatically increase the funding of research into Lysosomal Disease.
http://www.hideandseek.org/home.html

MUMS, Parent-to-Parent Matching

MUMS is a National Parent-to-Parent Network whose mission is to help parents who have a child with any rare diagnosis to make connections with other parents whose children have the same or similar condition. Matches are made according to age, geographical location, gender, and severity of the symptoms. The organization also has a newsletter.
http://www.netnet.net/mums/whatis.htm

National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders is the federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
http://www.rarediseases.org

The Genetic Alliance (formerly the Alliance of Genetic Support Groups - AGSG)

Dedicated to helping individuals and families with genetic disorders. The site provides publications and listings of events, and support.
http://www.geneticalliance.org

United Kingdom

Contact a Family

For families with disabled children.
http://www.cafamily.org.uk/

Genetic Interest Group (G.I.G)

The Genetic Interest Group (GIG) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.
http://www.gig.org.uk/