OPD Syndrome
Family Resource Network
Support
SUPPORT ORGANIZATIONS:

~Brave Kids: Resources for children with chronic, life threatening illnesses
or disabilities.

~
MUMS: National Parent-to-Parent Network

~
National Organization of Rare Disorders (NORD): Information and parent
matching for rare disorders and syndromes.

~
Our Kids Website: Devoted to raising special kids with special needs.
Email Lists:
Listen-Up:  http://groups.yahoo.com/group/Listen-Up/

Listen-up was created for parents of deaf/hard of hearing children for
informational and emotional support. The children have varied degrees of
hearing loss and communicate in many different ways. The main purpose
of this group is to advocate for the rights of their children. The group
shares problems, strategies, successes and failures, providing moral
support and advice and sharing methodologies.

Pierre Robin Network:
http://health.groups.yahoo.com/group/pierrerobin/

Pierre Robin Network is for parents, caregivers, family members, medical
professionals and adults interested in PRS. The purpose of the group is to
share experiences with each other to benefit those with PRS. It offers
support and ideas for those dealing with the issues of PRS.  This group
has experienced members who have all dealt with a variety of issues
related to PRS.

Our Kids:  Provides information and support for children with special
needs and their caregivers.