Maine mom pens son’s journey with rare genetic disease

Read article here.

Heidi Carson Reflects on Widowed Parenting and Finding Meaning Through Rare Disease Advocacy

Listen here.

New Liver, New Outlook

Read article here.

New Drug Regimen Proves Ideal for Patient with Rare Genetic Disease

Read article here.

Gabby’s Camp Quality Story: Doing more than she thought she could

Read article here.

RARE Health Equity Report: Building a More Inclusive Rare Disease Community

Download here.