Ciitizen launches SCN8A Program: Helping Patients Control Their Medical Records and Drive Research Forward
Head over to the portal to sign up here:
Being a parent to an SCN8A warrior can be overwhelming. In the rare disease world, it seems like many families have to become experts on the diagnosis, so that they can train and teach their medical teams and professionals. If you’re lucky, you end up at a healthcare institution that has maybe 3 or 4 kids with the same diagnosis, and you may have to go through several medical institutions before you get there. With advancing technology, wouldn’t it be great if that clinical data could be compiled for you, stored for review at any time, and shared easily with your physicians?
Ciitizen has a free sherpa service to help patients do exactly that!