One of our genetic counseling student colleagues at Wayne State University, Maryam Ijaz, and her program director, Angela Trepanier, performed an analysis of the data we collected from patients about their genetic counseling experiences, as a subset of the data we collected about prenatal Down syndrome diagnosis experiences, to see Read more…
Storytelling session at the Genetic Support Foundation event in 2018 discussing the top 5 things Stephanie Meredith wishes doctors or genetic counselors would have told her when her son, Andy, was diagnosed with Down syndrome back in the year 2000.
Learn how you can build relationships with medical providers, engage in medical outreach, and meet more new and expectant parents by collaborating with Early Intervention specialists and programs. Featuring Roxane Romanick, LCSW whose experience includes: Experience includes direct parent support, program and policy development, advisory involvement, and advocacy at the Read more…
Be included in cultural competency efforts with medical systems, schools, and Departments of Public Health: How do these entities describe Down syndrome—if at all? Are people with disabilities being included in educational efforts? What are the values of the organizations/entities? Who is the contact? Write a letter of concern and Read more…
Watch the video from our most recent medical outreach call about the results from our community conversations with Black and Hispanic parents of children with Down syndrome and their specific suggestions for how advocacy organizations can better meet their needs. You can also learn more about our Patient-Centered Outcomes Research Read more…
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 the information they received. The article “The impact of implicit 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 Master’s Degree program: each year, every incoming student is paired 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 and suburbs of big cities: Big Cities: State-based organizations:
Watch this video for disability advocacy organizations to learn how to build relationships with the broader medical community on national, state, and local levels.
