Below are some resources that I have found helpful:
SWAN (Syndromes Without A Name)is an organization that advocates for children and young adults who have syndromes without a name. They offer support, advice and information on the challenges that families face when there is no diagnosis. They also advocate for changes in the medical community that will benefit undiagnosed individuals.
Hopeful Parents is a community of parents who understand what it’s like to have a child with special needs. It covers a multitude of topics such as the physical, emotional and psychological needs of both parents and children. A great networking resources.
cleftAdvocate is a community that works to increase awareness and acceptance of congenital and acquired facial differences. This site has a wealth of information and resources for individuals and families.
Special Olympics doesn’t really need an explanation because you’ve heard of it unless you’ve been living under a rock. It is a great opportunity for children and adults with disabilities to be active in various sports. Their site will help you locate opportunities in your community. They also sponsor one of my favorite annual campaigns, “Spread the Word to End the Word.”