Having a rare diagnosis, like portal hypertension, can flip your whole routine overnight. One day you are simply enjoying life, and the next you are dealing with tests, hospital visits, and follow-up calls

The International Gaucher Alliance are prioritising the next generation of advocates.

Here, RARE Revolution Magazine’s Joe interviews young advocate Julio, founder of new support network Hope Beyond Diagnosis, about being a RARE sibling and why he decided it was the right time to help other families in similar situations.