We are a strongly committed and motivated group of patients, effected friends and family members who joined with scientist from all over the world and are keen on strengthening the communities needed to look for cures of the so-called VPS13 diseases.

If you either are :

- part of a family where a member was (recently) diagnosed with VPS13, or
- a scientist (keen) on working finding out more - or even a treatment or cure - for the various forms of VPS13, or
- somebody looking to donate time, effort or money to get ride of these diseases

then please do get in touch with us!

Currently we have members from various parts of the world. Just click on one of the flags here to get to know more about them :