“To optimise SATB2 syndrome management within the European healthcare system”
- We document the currently best treatments and therapies for SATB2 syndrome and share them with medical professionals, research communities and families.
- We strive to shorten the diagnostic journey by raising awareness about SATB2 syndrome on different levels.
- We initiate one or more European Reference Centre(s) for SATB2 syndrome-affected patients (being part of a European Reference Network) that will collaborate with other SATB2 syndrome reference centres and researchers around the globe. The centre will serve as an advisory board providing guidelines for local specialists treating SATB2 syndrome patients.
- We suggest strategies that help local organisations or individuals implement the optimal management of SATB2 syndrome within their national health system.
- We will work to get one or a few professionals of each medical specialization (e.g. neurologist, endocrinologist, dentist) per country to take on SATB2 patients.
- Through recommendations we will direct affected families to them so that SATB2 syndrome patients meet knowledgeable specialists and so that professionals get as much experience as possible with this patient group.
- We connect local clinicians (specialists) with the European Reference centre(s) for SATB2 syndrome-affected patients.
- By creating a network of clinicians (hospitals), research centres and SATB2 affected families, we enable sharing of data needed for research. The network will serve as a good basis to initiate clinical trials in Europe.
- We provide information and resources for caregivers that help them manage SATB2 syndrome-associated symptoms and empower them to make informed decisions.
- We launch awareness campaigns targeted at medical staff and aimed at:
- Recognition of symptoms and early diagnosis.
- Early evaluation and prognostics.
- Implementing accurate interventions and treatments throughout life.
- Guidance to helpful information, available clinical resources, and expert contact details.
How can I help?
We are currently looking for additions to the CareSATB2 team, but also for other tasks within design, communication, IT, translation and finance. Fill in the form below and let us know you want to contribute!