Links
Other SMS Support Groups
- Homepage des Hilfsvereins SIRIUS e.V. (Germany)
- Sindrome de Smith-Magenis (Mexico)
- Sindrome de Smith-Magenis para afectados y especialistas (Spain)
- Smith-Magenis Syndrome (Denmark)
- email Brigitte Wawrzyniak, the secretary of SMS Australia
SMS Research Sites
- NCBI - Entrez cross database search (Type in Smith-Magenis Syndrome to search across multiple databases)
- OMIM SMS Literature Search (Search for all research publications on SMS)
- PubMed Literature Search (Search for research publications by author or journal title)
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.
AAMR : Since 1876, AAMR has been providing leadership in the field of mental retardation. AAMR is the oldest and largest interdisciplinary organization of professionals (and others) concerned about mental retardation 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.
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.
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 Deletion Outreach: Chromosome Deletion Outreach, Inc. is a non-profit organization providing information & support for families and professionals affected by chromosome deletions, 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.
ResourceLink - 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
Elwyn Training
& Research Institute: 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 . Brenda Finucane, M.S. and Barbara Haas-Givler, M.Ed. provide
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
Brenda Finucane, M.S. at brenda_finucane@elwyn.org
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