19/02/2026
Have you heard about the European Reference Networks ( ) for rare diseases?
Launched by the European Commission in 2017, ERNs connect leading specialist healthcare providers across Europe to tackle rare and complex conditions that require highly specialised care and concentrated expertise.
Today, ERNs cover 24 disease areas and are part of a broader EU strategy to make healthcare systems more efficient, accessible and resilient.
✨ SATB2 Europe is proud to be an active Patient Advocacy Group within
(Rare Malformation Syndromes, Intellectual and Other Neurodevelopmental Disorders)
Our President, Erika Stariha, represents our community within this important network.
💜 BIG NEWS FOR THE SATB2 COMMUNITY
The first-ever Global Clinical Practice Guidelines for SATB2-Associated Syndrome (SAS) are currently in development.
This is a groundbreaking milestone and we will share more about this unprecedented project very soon.
🌍 WHAT IS ?
Jardin Joint Action was created to act as a bridge between ERNs and national healthcare systems.
Its vision is clear:
People living with rare diseases and complex conditions should be at the centre of care.
The goal is to make care pathways clearer, better coordinated, and easier to access by strengthening the work of European Reference Networks.
We are especially proud that our dedicated advocacy work has been recognised by — and that we were invited to represent the network within the Joint Action campaign.
Together, we continue raising awareness about wherever possible 💜
Read a powerful firsthand experience here 👉
https://jardin-ern.eu/patient-story/urbans-story/
A mother's perspective on her child with a rare neurological developmental disorder: SATB2 syndrome, first diagnosed case in their country.
