There are a lot of unknowns during this time for patients with rare genetic conditions and our team is here to help. Please reach out to your genetics providers with specific questions or concerns.

General Resources

For general information on COVID-19 and frequently asked questions, visit the Johns Hopkins University Coronavirus Resource Center and the Johns Hopkins Medicine COVID-19 website.

The CDC provides general information including information on your state and local health departments,  steps on how to protect yourself and guidance for older adults and other individuals at higher risk.

Condition-specific COVID-19 resources

• Newborn screen conditions (includes links for Urea Cycle defects and metabolic conditions, thyroid diseases, Sickle Cell Anemia, Cystic Fibrosis, SCID, SMA, X-linked ALD
• Hearing Loss
• Dwarfism
• Mucopolysaccharidoses (MPS) and mucolipidosis (ML)
• Primary ciliary dyskinesia
• Immune Deficiency
• Cancer
• Marfan, Loeys-Dietz, Vascular EDS and other Aortopathies

Family COVID-19 Resources

The Johns Hopkins Children’s Center has several helpful resources for families and children.

• Coronavirus in babies and kids
• 5 things kids need to know about coronavirus
• Helping kids understand what is going on and cope with change of schedule
• Coping tips for children with autism

Additional resources for parents can be found on the American Academy of Pediatrics website which includes information broken down by age group from baby to young adult, Expecting Health, which provides information for pregnant women and Family Voices, which includes emergency preparedness tips.