Long-term Care Planning for Children with Complex Healthcare Needs
Discusses estate planning for children with complex healthcare needs
Priya S. Kishnani, MD – New Insights into Hepatic Glycogen Storage Diseases (SERN/SERGG 2022)
Discusses knowledge gaps of Hepatic Glycogen Storage Diseases.
Lori Carter Edwards, PhD, MPH – Addressing Genetic Conditions through a Trustworthy Community Engagement Lens (SERN/SERGG 2022)
Discusses the principles of community engagement, highlighting key strategies to help health professionals build trustworthiness with families, and promote health equity when addressing genetic conditions.
Tara Britt – How Policy Impacts Rare Disease (SERN/SERGG 2022)
Overview of the Rare Disease Advisory Council (RDAC) and how families can get involved in their state’s organization. Find Your State’s RDAC
Genetics Visit FAQs
This handout provides answers to frequently asked questions about a genetics visit and what to expect. Genetics Visit FAQ in English Genetics Visit FAQ in Spanish
National Organization for Rare Disorders (NORD)
NORD is an organization that provides resources for patients and families with rare disorders. Here you can find webinars, educational resources, a list of rare disorders, and other materials to assist with learning more about rare disorders.
Genetic and Rare Diseases (GARD) Information Center
GARD knows that understanding medical terms and technology related to a genetic disorder can be difficult. The Center has developed a glossary of medical terms to help patients and their families understand the language used.
Newborn Screening Disorder Fact Sheets
Provides information on disorders screened via the newborn screening program. These fact sheets were developed for families who want to learn more about a disorder.