Search This Blog
Our families journey with a life threatening neuro-muscular disease, from searching for a diagnosis to end of life challenges to the grief roller-coaster. PCH1A, a altercation of the VRK1 gene
Posts
Showing posts with the label rare disease
Posted by
Marci Scher
Fuck Rare Disease
- Get link
- X
- Other Apps
Posted by
Marci Scher
Rare Disease Day 2020 - Parents, Patients, Doctors
- Get link
- X
- Other Apps
Posted by
Marci Scher
Keep Your Eye on the Ball
- Get link
- X
- Other Apps
Posted by
Marci Scher
Oh the Places You'll Go - Rare Disease Edition
- Get link
- X
- Other Apps
Posted by
Marci Scher
When You're the Parent of a Kid With a Disability, It's Hard to Accept Help
- Get link
- X
- Other Apps
Posted by
Marci Scher
RARE DISEASE DAY 2018
- Get link
- X
- Other Apps