We are a group of parents from Germany, Ireland, and the UK who created this website to collect and share as much information as possible about this extremely rare disease.
Our goal is to foster exchange between other parents, organizations, and those affected – only together can we raise awareness of this little-known condition and expand our knowledge.

It is particularly important to us to raise awareness of this rare disease and to find support for those affected.

Since we are still in the development phase, we will continuously expand and update the site to provide as much relevant information as possible.

We appreciate any support!
If you have any tips, experiences, or materials you would like to share with us, please feel free to use our contact form.

Thank you for your visit!