Links

Other SMS Support Groups

SMS Research and Support

Advocacy/Education

The Arc - The national organization of and for people with mental retardation and related disabilities and their families. The ARC has local chapters in communities across the US.

AAIDD - Since 1876, AAIDD (formerly AAMR) has been providing leadership in the field of mental retardation. AAIDD is the oldest and largest interdisciplinary organization of professionals (and others) concerned about intellectual disabilities and related disabilities.

Council for Exceptional Children - The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted.

Exceptional Parent - Exceptional Parent magazine provides information, support, ideas, encouragement and outreach for parents and families of children with disabilities and the professionals who work with them.

Johnny's Rainbow Foundation - Johnny's Rainbow Foundation’s mission is to help families with special needs children by providing them with financial support called a Rainbow Grant. The Rainbow Grant is intended to make a significant difference in the life of the special needs child by funding equipment, experiences, parent education, family counseling, therapy, or any other of the child’s needs.

National Association for Dually Diagnosed (NADD) - NADD is a not-for-profit association designed for professional and family interests on behalf of individuals who have developmental disabilities and mental health needs. NADD has been influential in the development of appropriate community based policies, programs and opportunities in addressing the mental health needs of persons with mental retardation.

National Association of Private Special Education Centers - NAPSEC represents private specialized education programs serving individuals with disabilities and their families. They offer a free referral service which can provide you with a list of all residential centers in your area based on your child's needs.

Positive Exposure - Positive Exposure, founded in 1997, by Rick Guidotti, photographer, and Diane McLean, MD, PhD, MPH, is a highly innovative arts organization working with individuals living with genetic difference. Rick has been a vibrant presence at many of our conferences and took many of the photos that appear on this website. Rick travels the world, sharing a bit of SMS wherever he goes and promotes awareness, acceptance and celebration!

SERI - Special Education Resources on the Internet (SERI) is a collection of Internet accessible information resources of interest to those involved in the fields related to Special Education.

Wrightslaw - Wrightslaw is for parents, advocates, educators, and attorneys who want accurate, up-to-date information about special education law and advocacy for children with disabilities.

Genetics

Chromosome Disorder Outreach - Chromosome Disorder Outreach, Inc. is a non-profit organization providing information & support for families and professionals affected by a wide range of chromosome disorders, including deletions, duplications, trisomies, inversions, translocations, and rings.

GeneClinics - A searchable directory of international genetics and prenatal diagnosis clinics.

Genetic Alliance - The Genetic Alliance is an international coalition of individuals, professionals and genetic support organizations that is working together to enhance the lives of everyone impacted by genetic conditions.

Genetic Centers, Clinics and Departments - A comprehensive resource list for genetic counseling, including links to genetic centers and clinics, associations, and university genetics departments. Hosted by the University of Kansas Medical Center.

Genetics Education Center - The Genetics Education Center is for people interested in human genetics and the human genome project. Hosted by the University of Kansas Medical Center.

National Society of Genetic Counselors - A database of genetics counseling services, searchable by location, name, institution, type of practice or specialty. Hosted by the National Society of Genetic Counselors.

Unique - Unique is a source of information, mutual support and self-help to families of children with any rare chromosome disorders including deletions, trisomy, balanced translocations, unbalanced translocations, rings, inversions, duplications, tetrasomy, monosomy, triploidy, isodicentric, marker, mosaic, and sex chromosome aneuploidy.

Financial Planning

MetLife Special Needs Planning - This guide about Planning for Your Child or Other Dependent with Special Needs was produced by the MetLife Consumer Education Center and reviewed by the Administration for Children and Families, U.S. Department of Health and Human Services and Exceptional Parent Magazine.

Consulting Services

Genetic Services at Elwyn - Elwyn is a nonprofit organization headquartered near Philadelphia which provides a variety of services for people with developmental disabilities, including SMS. Its genetics outreach programs include an SMS Consultation Service for school students as well as adults with Smith-Magenis syndrome. Barbara Haas-Givler, MEd, provides staff training and assessment of individuals with SMS at their schools, work places, and residences in the U.S. and Canada. For more information, contact Barbara Haas-Givler, at Esta dirección electrónica esta protegida contra spambots. Es necesario activar Javascript para visualizarla .

Specialized Services

Sensations TheraFun - Sensations TheraFun offers a wide range of services to families to satisfy the sensory needs of their children. It gives parents, kids and therapists an additional place for therapy, outside of the therapists’ office that is fun for kids and their families. It is most effective for kids being seen by their private therapist. Yet, Sensations TheraFun is great place for kids ranging from those currently in therapy or those who just need a good place to play.