Living With Conditions Support and Advocacy
After receiving a diagnosis for their child through newborn screening, many families want to connect with others who have had similar experiences. Thanks to advances in technology, it is now possible for people around the world to connect and share their stories, no matter how far apart they are. Support groups link families to a greater community of people who have also been touched by a specific condition. These organizations offer the tools needed to cope day-to-day, find solutions, obtain services, and heal.
Not only do condition-specific organizations provide a connection to other families, but they are often the best providers of high quality and accurate information. They know firsthand what it means to be faced with a diagnosis and the need for accurate information. As experts on their condition, these groups are highly motivated to keep this information up-to-date, accessible, and to share it with the community. At the bottom of specific condition pages, there are links to support services for each community.
There are many organizations that support newborn screening in general. Here are links to a few:
- March of Dimes
- Newborn Critical Congenital Heart Disease Screening Progress
- Save Babies Through Screening Foundation
- EHDI PALS – Hearing Loss
Disease InfoSearch is an online resource that provides information about diseases and their related support and advocacy groups. Disease InfoSearch provides information about the various newborn screening conditions and other diseases that may run in your family. In addition, Disease InfoSearch can connect you with a number of support organizations where families are working together to increase awareness about specific conditions, to advance treatments and therapies, to raise funds for research projects, and to keep others informed about the condition.
Parents are often among the most influential advocates. There are many different ways parents can get involved in the newborn screening system, both with specific condition organizations and without. A few ways to get involved include the state advisory committees, the Consumer Task Force on Newborn Screening, and making public statements at the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) meetings.