Partners & Projects

Genetic Alliance
Parent to Parent USA supports the National Genetics Education and Family Support Center in building a network of partners and develop accessible tools to improve access to and the quality of genetic services. View the Reference Guide for needs assessments and community partnerships. Download the Family Center’s newly launched infographic: “Telewhat?! – An Introduction to Telegenetics.”

Expecting Health
Parent to Parent USA is collaborating with Expecting Health on the launch of a free educational module for families called Navigate Newborn Screening. In this short module, families will learn about the newborn screening process, questions to ask their healthcare provider, and more. Download a summary of Navigate Newborn Screening or sign up for free.

Expecting Health’s webinar, “Coming Together to Support Communities: Supporting Families During the COVID-19 Pandemic and Beyond” is now available on our YouTube channel and captions can be accessed at this link. Resources discussed on the webinar include:
Expecting Health’s COVID-19 pages
Baby’s First Test COVID-19 page
Hands & Voices COVID-19 resources
CureSMA COVID-19 Information Center
Navigate Newborn Screening educational modules, including the COVID-19 modules now available

Parent to Parent USA has been a partner with the National Resource Center on Supported Decision-Making (NRC-SDM) to promote Supported Decision-Making and Alternatives to Guardianship. With other parent organizations, we brought a parent voice to the project. We have compiled a listing of resources that may be of assistance to families and individuals with disabilities. Click here for more resources.

Parent to Parent USA has worked with the Primary Care Collaborative (PCC) to help address and improve patient and family engagement in clinical practices and to engage more practices in referring to parent to parent programs. Visit the PCC to learn more about ways to get involved in improving clinical practice.