Our story
What have we accomplished so far?
We’re contacting clinicians in our home countries to share insights on the latest research frontier and our plans for a transnational clinical network.
We’ve arranged a meeting with one of the most interesting gene therapy companies out there. It’s good to put the SATB2 gene on their radar!
We’re recruiting people who can help us translate information to different European languages.
On August 22 we’re celebrating SATB2-associated syndrome awareness day.
We’ve got a new frame for SAS supporters on Facebook: WeAreSATB2
We’re researching and discussing different options for patient registries.
We’re in contact with families in Portugal, trying to connect them with each other.
We’ve finally got our legal entity approved by the authorities.
We helped a researcher get 25 testimonies from families with real life experience of SAS. Bench to bedside has never been closer!
Our Instagram account is up and running.
Our first newsletter is out, meaning we have an efficient way to get out important news to our families and friends.
We are now talking with 13 SATB2 researchers on a regular basis
Researchers have started to contact us! They want to know how we can work together.
We met with the newly founded De Stichting SATB2-Syndroom Nederland-België, representing SATB2 families in the Netherlands and Belgium. It was a great meeting!
We onboarded Nancy and 2 other very motivated parents. Together for change!
We recruited 3 new researchers to the SATB2 Syndrome Research Community on Facebook. Creating opportunities to connect families and researchers for exchange of experience and ideas is one of our missions.
We got a very generous gift from Asociación Española SATB2 – they decided to share their fantastic logotype with us. We love it, and especially how it shows two of the most prominent characteristics of the SATB2 syndrome!
We onboarded our first new team member!
Sonia from Spain joined us with a ton of energy and skills in marketing.
We met with SATB2 families in Germany and Austria and got so many new volunteers!
We met with Asociación Española SATB2, representing ~20 SATB2 families in Spain.
We set a list of detailed goals for the CureSATB2 initiative during 2021.
We met with Association Française du SATB2 representing ~50 SATB2 families in France. This national organisation already has a lot of inspiring activities!
One of our founders got a scientific paper on SATB2-associated syndrome published.
We were in contact with SATB2 families in Slovenia.
We contacted SATB2 families in Finland, and they wanted to support us!
We met with SATB2 families in Poland. Wow, what a response!
And we got some great support with simultaneous translation, how cool is that?
We finished our Strategic Plan, setting our vision and missions on paper.
We met with SATB2 families in Italy, all very cheerful!
We managed to set up a working IT solution to accelerate the teamwork.
Email addresses and a technical collaboration platform will help us in our daily work.
We published our website at satb2europe.org.
A first version, that will improve a lot over time.
We were in contact with a SATB2 family on Iceland. Halló!
We were in contact with SATB2 families in Serbia.
We decided the name of our new organisation – SATB2 Europe.
We met with SATB2 families in Norway and they were positive about our initiative!
We met with SATB2 families in Sweden and Denmark that encouraged us to work towards our goals!
The idea of SATB2 Europe and the Cure and Care initiatives was born during the winter 2020/2021. Six dedicated parents with the joint goal of changing the odds for our children started to meet virtually.
Do you want to be part of the SATB2 success story?
Then fill in the form below to join our amazing team!
How can I help?
We are currently looking for additions to the team. We need people that have the time, and want to help out! We have lots of different tasks we need help with, for instance design, communication, IT, project management, translation, medicine and finance. Fill in the form below and let us know you want to contribute!