COVID 19 Resources for Individuals and Families with Genetic Conditions

During this time of the COVID 19 (coronavirus) pandemic, here are some resources that may be helpful to individuals and families impacted by genetic conditions. If you have any medical questions during this time, please consult you or your loved one’s primary care physician.

For the most up to date public health information please check the Center for Disease Control’s (CDC) COVID 19 webpage here.

If you reside in one of the 8 states (AZ, CO, MT, NV, NM, TX, UT, WY) in our Mountain States Region, please check our state-specific pages for COVID 19 state-specific resources.

The National Coordinating Center for the Regional Genetic Networks had developed this infographic resource (click on the graphic to access a clickable pdf)

General Resources for Families of Children and Youth with Special Health Care Needs

American Academy of Pediatrics (AAP): COVID 19 Info for Families of Children and Youth with Special Health Care Needs

Family Voices COVID 19 resources

Lucille Packard Foundation for Children’s Health COVID Resources


Toolkits and Worksheets (that Families can complete together)

Southeast Regional Genetics Network: Emergency Preparedness 

American College of Emergency Physicians – Emergency Plan for Special Needs Families


Genetic Condition-Specific COVID-19 Resources:

Autism here and here

Barth Syndrome



Marfan Syndrome

Mitochondrial Disease

Neurological Disorders 

Neurofibromatosis (NF)

Urea Cycle Disorders

Rare Diseases 1 (NORD)

Rare Diseases 2 (Global Genes)


(This page will continually be updated, if you have a resource or genetic condition-specific guidance you would like us to review for addition to the list, send us your suggestions here)


Categories: For Families