ADDITIONAL RESOURCES

Jamal’s Helping Hands
Navigating Rare During A Pandemic
Day 1
Jamal’s Helping Hands
Navigating Rare During A Pandemic
Day 2
Jamal’s Helping Hands
Navigating Rare During A Pandemic
Day 3
Alabama Rare Advocacy Webinar
Rep. Roybal-Allard Urges House to Pass
Newborn Screening Saves Lives Reauthorization Act
The Matus Law Group
American Cancer Society Cancer Action Network
American Cancer Society Cancer Action Network
Medicaid & COVID-19 Through the Health Equity Lens

Cardiac Surgery in Infants with Trisomy 13 and 18

Reference Articles

Barriers to Rare Disease Diagnosis, Care and Treatment in the U.S.
Guardianship 101
Medicaid Chart Book
Trisomy 18 Head Circumference Chart
Trisomy 18 Height Chart
Trisomy 18 Weight Chart
The National Economic Burden of Rare Disease Study Summary Report
Turning Mealtimes Into Learning Opportunities