Get accurate, up-to-date, and balanced information about a range of genetic conditions reviewed by representatives of national medical, genetics, and advocacy organizations.
Training and technical assistance for medical professionals and patient advocacy groups about best practices for supporting new and expectant parents learning about a genetic diagnosis.
Make a donation to support our work. Funds go toward providing free materials to medical providers and expectant parents, presenting at national conferences, and adding multiple translations.
Learn more about another program offered by our National Center to support new & expectant parents of children with Down syndrome. Down Syndrome Pregnancy supports families preparing for the birth of a baby with Down syndrome or welcoming a new baby.
Find links to the Down Syndrome/Genetic Conditions Information Acts passed in each state and the corresponding department of health resources. Almost all states recommend our resources as part of their state fact sheets.
“Receiving a prenatal diagnosis can be overwhelming for families, leaving them wondering what life is like for people living with the condition. ‘Understanding a Down Syndrome Diagnosis’ is often described as a lifeline for families learning about a diagnosis, and I believe, as did my mother, that expectant parents need that support and information right away.”
“When expectant parents across the country receive a prenatal diagnosis, they consistently deserve to receive accurate and up-to-date information about the condition. Finally, we have that information through the booklets created by Lettercase. I hope that all expectant parents with a prenatal diagnosis receive this information.”
Our organization completed the the medical outreach training 5 years ago. The resources, tips and ideas that were shared at the training have helped our program get to where it is today. Our efforts continually grow as a result of being involved with the National Center. All of the materials are the most current and up-to-date which make it easier to get in the door with targeted medical professionals. Even after the initial training, support is ongoing.
Watch this video to learn how disability advocacy organizations can customize their medical outreach program for the unique demographics they serve: rural and small areas, medium-sized areas and suburbs, big cities, and state-based organizations. Rural Read more…
Watch this video for disability advocacy organizations to learn how to build relationships with the broader medical community on national, state, and local levels.
Watch this video to find state-level partners who can help local disability advocacy organizations engage in medical outreach. Funding, Collaboration, Advertisement, Training, and Support UCEDD/LEND programs: https://www.aucd.org/template/index.cfm Protection and Advocacy Organizations: https://acl.gov/programs/find-your-pa-agency DD Council: https://nacdd.org/councils/ Parent Read more…
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