Our team at UK just published a study on the experiences of patients learning about a prenatal diagnosis of Down syndrome and the information provided to them when receiving prenatal screening results. We also examined how implicit and explicit bias impacted Read more…
Overview of Operation Housecall: A Collaboration between the Stanford MS Program in Human Genetics and Genetic Counseling and the Silicon Valley Down Syndrome Network (SVDSN). What is Operation Housecall?“Operation Housecall is a partnership SVDSN has with Stanford University’s Genetic Counseling Read more…
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 and small areas: Medium-sized areas 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 Center: Parent to Parent and Read more…
At our last Medical Outreach meeting for local Down syndrome organizations, we discussed how you can grow medical outreach programs by starting the new year with 3-5 medical outreach goals and then evaluating your progress at the 6 months mark Read more…
We are excited to share with you our new manuscript (“Recommendations to improve the patient experience and avoid bias when prenatal screening/testing”) in Disability and Health Journal. Our multidisciplinary team of advisors for the Center for Dignity in Healthcare for People with Disabilities worked for Read more…
For Health Professionals Supporting New and Expectant Parents: For Health Professionals Supporting Patients Across the Lifespan: Other Information to Share:
Watch our webinar about strategies that local Down syndrome organizations can use to apply for grants to fund medical outreach efforts: Finding grants. Local Mission specific Relationships with funders Check out funders and other projects funded Federal: Get partners with Read more…
On May 13, 2022, the National Center for Prenatal and Postnatal Resources, housed at the UK Human Development Institute hosted the Prenatal Disability Education Summit. This event was sponsored by the Joseph P. Kennedy, Jr. Foundation(JPKF) and brought together national medical, advocacy, bioethics, industry, Read more…