National / International Resources

Table of Contents

American Occupational Therapy Association

The American Occupational Therapy Association is the national professional association to represent the interests and concerns of occupational therapy practitioners and students of occupational therapy and to improve the quality of occupational therapy services

Visit Online

https://www.aota.org/

American Speech-Language-Hearing Association

The American Speech-Language-Hearing Association (ASHA) is the national professional, scientific, and credentialing association for 191,500 members and affiliates who are audiologists; speech-language pathologists; speech, language, and hearing scientists; audiology and speech-language pathology support personnel; and students.

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https://www.asha.org/

Center for Parent Information & Resources

Your central “Hub” of information and products created for the network of Parent Centers serving families of children with disabilities”

“All the materials found on the CPIR Hub have been created and archived for Parent Centers around the country to help them provide support and services to the families they serve. The CPIR employs a user-centered process, gathering the perspectives of our experienced audience—Parent Center staff members and other experts—every step of the way, to create products and services that increase Parent Centers’ knowledge and capacity in specific domains.”

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https://www.parentcenterhub.org/

Down Syndrome Diagnosis Network (DSDN)

“You may have just heard these words.  Whether you are awaiting your child’s arrival or your baby has just been born, a new or potential diagnosis can seem overwhelming.

Let us help.  Let us provide resources and education.  Let us connect you to other parents who have been in your shoes.”

Visit Online

https://www.dsdiagnosisnetwork.org/

Down Syndrome Education International

“We are an international charity that supports scientific research and delivers evidence-based advice and information to improve outcomes for children with Down syndrome worldwide.

Down Syndrome Education International has been at the heart of educational research and support for young people with Down syndrome for over 30 years. Today, our research, resources and services help people with Down syndrome in over 170 countries achieve more and live more independent and fulfilling lives.

You can find out more about our research, resources and services on the main DSE web site”

Visit Online

https://www.dseinternational.org/en-us/

DS-Connect

DS-Connect® is a powerful resource where people with Down syndrome and their families can:

  • Connect with researchers and health care providers.
  • Express interest in participating in certain clinical studies on Down Syndrome, including studies of new medications and other treatments.
  • Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with Down Syndrome across their lifespans.

Visit Online

https://dsconnect.nih.gov/

Eunice Kennedy Shriver Intellectual & Developmental Disabilities Research Centers (EKS-IDDRCs)

This program, established 1 year after NICHD’s founding, supports researchers whose goals are to advance understanding of a variety of conditions and topics related to intellectual and developmental disabilities (IDDs). NICHD’s Intellectual and Developmental Disabilities Branch (IDDB) funds the program, which includes 15 research centers, located at universities and children’s hospitals throughout the country.

Visit Online

https://www.nichd.nih.gov/research/supported/eksiddrc

Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. Formally established in 2009, Global’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.

Visit Online

https://www.globaldownsyndrome.org/

 

Inclusion International

“The international network of people with intellectual disabilities and their families”

Inclusion International is the international network of people with intellectual disabilities and their families advocating for the human rights of people with intellectual disabilities worldwide.  Together they agree on a Statement of Unity (SoU en Español) and are committed to progress towards inclusion International’s vision.

Visit Online

https://inclusion-international.org/

International Mosaic Down Syndrome Association

From imdsa.org/:

“International Mosaic Down Syndrome Association (IMDSA) is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.

IMDSA provides a variety to helpful services to meet the needs of any individual interested in mosaic Down syndrome.”

Visit Online

https://www.imdsa.org/

LuMind IDSC

This research organization is dedicated to the study and better understanding of Down Syndrome and its many effects. Their website has many useful resources for families.

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https://www.lumindidsc.org/

Medicaid

The national Medicaid website.

“The Centers for Medicare & Medicaid Services (CMS) is responsible for implementing laws passed by Congress related to Medicaid, the Children’s Health Insurance Program (CHIP), and the Basic Health Program. To implement these programs, CMS issues various forms of guidance to explain how laws will be implemented and what states and others need to do to comply. In addition to regulations, CMS issues sub-regulatory guidance to address policy issues as well as operational updates and technical clarifications of existing guidance.”

Visit Online

https://www.medicaid.gov/

National Society of Genetic Counselors (NSGC)

“The National Society of Genetic Counselors (NSGC) promotes the professional interests of genetic counselors and provides a network for professional communications. Access to continuing education opportunities, professional resources, advocacy and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of belonging to the NSGC.”

Visit Online

https://www.nsgc.org/ 

NDSC: the National Down Syndrome Congress

The National Down Syndrome Congress (NDSC) is a membership-sustained not-for-profit organization dedicated to an improved world for individuals with Down syndrome. Founded in 1973, we are the leading national resource of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of a prenatal diagnosis through adulthood. The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.We have worked tirelessly over the years to foster a network of local and regional groups across the country to reach out and embrace thousands of people with Down syndrome, their families, friends and the professionals who support them. We are the people who believe in our kids, demand their rights and get them affirmed. We are the community who supports them in all they do from infancy to adulthood. We are also people with Down syndrome, working together for a better future.

NDSC Mission and Vision Statements

The mission of the National Down Syndrome Congress is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.

The vision of the NDSC is a world with equal rights and opportunities for people with Down syndrome.

Visit Online

https://www.ndsccenter.org/

 

NDSS: The National Down Syndrome Society

NDSS Mission

The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome.

NDSS Vision

The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Visit Online

http://www.ndss.org/

 

Skotko, Brian, MD, MPP

A Board-certified medical geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital, Dr. Skotko has dedicated his professional energies toward children with cognitive and development disabilities. In 2001 he co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School. Dr. Skotko recently authored major research on how physicians deliver a diagnosis of Down syndrome to new and expectant parents. He has been featured in The Wall Street JournalThe New York TimesThe Washington PostThe L.A. Times, NPR’s “On Point,” and ABC’s “Good Morning America.” Dr. Skotko serves on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress, the Board of Directors for the Band of Angels Foundation, and the Professional Advisory Committee for the National Center for Prenatal and Postnatal Down Syndrome Resources.

Visit Online

Be sure to sign up for his newsletter on his website: http://brianskotko.com/

The Down Syndrome Medical Interest Group – UK

This site provides essential information for healthcare professionals on ‘best practice’ medical care for people with Down syndrome in the UK and Ireland. It has been produced by the UK Down Syndrome Medical Interest Group (DSMIG), a network of doctors whose aim is to ensure equitable provision of medical care for all people with Down syndrome in the UK and Republic of Ireland.

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DSMIG – Down Syndrome Medical Interest Group

 

The Down Syndrome Medical Interest Group – USA

Members of this DSMIG-USA are professionals from a variety of disciplines who provide care to individuals with Down syndrome and/or their families. This may include physicians, scientists, psychologists, nurses, genetic counselors, educators, therapists, clinic coordinators, and related health professionals. Members may also include individuals who engage in research or health policy relevant to Down syndrome. Most members work in specialized Down syndrome clinics, at academic institutions, university- and community-based medical centers, or private practice. Students, Residents, Fellows and other Trainees are welcome to join.

Visit Online

https://dsmig-usa.org/

 

The Down Syndrome-Autism Connection

“The Down Syndrome-Autism Connection™ is the only nonprofit organization dedicated solely to co-occurring Down syndrome and autism spectrum disorder (DS-ASD) in the United States.”

“Our mission is to provide education and support to individuals facing the unique challenges caused by co-occurring Down syndrome and autism.”

Visit Online

http://www.ds-asd-connection.org/

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