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. Advocacy and 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 advocacy 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, advocacy groups are highly motivated to keep this information up-to-date, accessible, and to share it with the community.
Disease InfoSearch is an online resource of information about genetic conditions and their related support and advocacy groups. DIS offers useful information about specific conditions including relevant advocacy and support organizations, general resources, scientific literature, links to websites that provide symptom, diagnosis, and treatment information, and clinical trial information.
Many of these organizations also have advocacy branches where families are working together to increase awareness about specific conditions, advance treatments and therapies, raise money to fund research projects, and provide families a way to keep informed about the condition.
The National Initiative for Children's Healthcare Quality (NICHQ) has a handbook called Powerful Partnerships (will open as a PDF) that is designed for both family members and healthcare professionals who are working together to improve care for children with special healthcare needs. Joining together in multi-disciplinary teams, family members and providers are increasingly working as equal partners to improve care.
For more information about advocacy and support groups for a specific condition please type in your condition of interest on the Find a Condition page to see supported services.