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National Resources

National Down Syndrome Society (NDSS) is the largest non-governmental supporter of Down syndrome research in the United States. NDSS continues to increase public awareness about Down syndrome and discover its underlying causes through research, education and advocacy. NDSS distributes timely and informative materials, encourages and supports the activities of local parent support groups, sponsors conferences and scientific symposia and undertakes major advocacy efforts—all to increase awareness and acceptance of people with Down syndrome. The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.

National Down Syndrome Congress (NDSC) is a not-for-profit organization founded in 1973. The purpose of the NDSC is to promote the interests of persons with Down syndrome and their families through advocacy, public awareness and information dissemination on all aspects of Down syndrome. The NDSC works to empower its members and all persons with Down syndrome by creating a national climate in which all persons will recognize and embrace the value and dignity of persons with Down syndrome.

Down Syndrome Pregnancy is a program administered by the Human Development Institute at the University of Kentucky to provide honest, compassionate, and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis. HDI also administers Brighter Tomorrows, an online resource for new and expectant parents, and Lettercase, a booklet for expectant parents first learning about a Down syndrome diagnosis.

Down Syndrome Research and Treatment Foundation is dedicated to finding a treatment to improve cognition including learning, memory and speech for individuals with Down syndrome.

Down Syndrome Education USA is a leading nonprofit dedicated to raising levels of educational achievement among children with Down syndrome. We are at the forefront of developmental and educational research and evidence-based services improving outcomes for children with Down syndrome.

Down Syndrome Information Network offers a range of information resources and online services to the international Down syndrome community. It aims to provide information and services for families, careers, professionals and researchers worldwide. The Web site has over 1,000 pages of information, equivalent to at least 6,000 printed pages.

Down Syndrome: Health Issues is a Web site full of helpful articles regarding medically related topics related to Down syndrome. The site is authored by Len Leshin, M.D., F.A.A.P. who, in addition to offering general pediatric care, is a member of the Down Syndrome Medical Interest Group and is the father of a child with Down syndrome. The site includes printable record sheets based on Down Syndrome Health Care Guidelines. This is one of the most comprehensive, down-to-earth sites regarding Down syndrome on the Web.

Down Syndrome Medical Interest Group USA is a leader in the advancement of knowledge and understanding of Down syndrome. We are a multidisciplinary group of professionals in the field of Down syndrome working together to:

•establish evidence-based standards of care.
•engage in clinical research about Downsyndrome
•support the development of Down Syndrome clinics.
•provide state-of-the-art information to others who are entrusted with the care of individuals with down syndrome.

MetDESK’s mission is to help families plan for the future of their children or other dependents with special needs, including preserving government benefits and providing insurance and other financial solutions which can help provide lifetime quality care. The planning process begins with a complete review of your dependent’s needs, future care plans, assessment of government benefit eligibility, and finally a review of your family’s current financial and legal plans. Critical areas that must be addressed are:
1. Government benefit eligibility requirements for Supplemental Security Income SSI and Medicaid
2. Types of special needs trusts and knowing which are right for you
3. Guardianship, Conservatorship and Client Self-Determination and Empowerment Issues
4. Appropriate funding vehicles – including life insurance, to help guarantee your child’s future quality of life.

Research Down Syndrome is a non-profit foundation that supports Down syndrome cognitive research, an area that in the last 5 years has experienced great advances towards developing biomedical therapies to treat the cognitive impairment of people of all ages with Down syndrome.

Disability News Blog: More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This blog attempts to explore what we know about disability, and to chronicle the efforts of people who are seeking new ways to address familiar challenges.  Join journalist Patricia E. Bauer, mother to an adult daughter who has Down syndrome, as she sifts through current news and commentary, bringing you the best information about what’s happening now and what it may mean for you and your loved ones.

Special Offspring Educational Tools offers education programs and materials for students with Down syndrome and other developmental delays.


Our special thanks to the Down Syndrome Guild of Greater Kansas City for being our source for the above information.