I know a lot of my readers are connected with the Hirschsprung community.
And what do all of us HD people want?
Better information and improved diagnosis and treatment.
To make that happen, there needs to be more research. And guess what? There's some happening right now at John Hopkins. And they need more participants.
So please check it out. All you need to do is sign a release form so they can access medical records and submit a blood or saliva sample. They'll send you a kit and walk you through the process. Easy, peasy, as Mo would say.
We all know how rare this disease is. Have you ever met another Hirschsprung patient or parent? I haven't -- not in person. So you can understand their challenge in trying to find us for research purposes.
Here's how to get involved.
Here's an interesting overview.
I signed up yesterday, and they're sending our kit Monday. I'll keep you posted.
1 year ago