When you hear the word “family,” who do you think of? Most people think of their immediate family and relatives, such as parents, siblings, grandparents, aunts, uncles, and cousins. However, this word means so much more to me. After a rare disease diagnosis, we often…
Columns
Recent Posts
- You’re not failing if you can’t remember every detail about your child
- Muscle damage begins before visible changes appear in LOPD
- Nighttime breathing issues can emerge even with early Pompe care
- When a medical trip feels like a vacation to a child with rare disease
- Newborn screening finds more presumed LOPD cases than expected