JUST DIAGNOSED
Receiving a diagnosis of SLC6A1-related neurodevelopmental disorder (SLC6A1-NDD) can feel overwhelming.
You are not alone.
SLC6A1 Europe was created by families, for families — to connect, share knowledge and accelerate access to better treatments.
Has your loved one just been diagnosed with an SLC6A1-NDD?
What should you do next?
1. Connect with Us
The first step is simply reaching out.
Contact us directly at:
Or connect with the national SLC6A1 association in your country of residence.
We will help you find information, understand available resources and guide you toward opportunities to connect with other families.
. treatments and combinations that may have helped;
. seizures and other medical concerns;
. behaviour, sleep and development;
. feeding, mobility and everyday care;
. medication effects and side effects;
. specialists, hospitals, research studies and clinical trials;
. school, support services and daily family life.
2. Join the Family Community
Connecting with other families can make an enormous difference. Living with SLC6A1-NDD brings challenges, questions and emotions that can be difficult to explain to someone who has not experienced them firsthand.
Among families, there is often an immediate and profound sense of understanding. We recognise one another’s worries, exhaustion, hopes and small victories—often without needing many words. Being part of this community offers a safe space where families can speak openly, feel truly understood and discover that they are not alone.
Families also share valuable practical knowledge and real-life experiences concerning:
Because SLC6A1-NDD is so rare, much of this collective knowledge has not yet been formally studied or published. Important observations and experiences are often shared within the family community long before they appear in the medical literature.
While these experiences do not replace professional medical advice, they can help families recognise possible patterns, ask more informed questions and discuss new options with their healthcare teams.
We can help you connect with SLC6A1 family communities across Europe and worldwide.
These may include:
European WhatsApp family group
We help introduce families and facilitate access where appropriate.
National family and self-help groups
Depending on where you live, local support communities may already exist.
Worldwide Facebook community — SLC6A1 Family Support Group
Families can request access directly through the Facebook group.
No one should face this journey alone.
3. Register
Visit our Data Collection Page and register in:
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SLC6A1 Database — SLC6A1 Connect
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Matrix
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Simons Searchlight
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SLC6A1 Database — Danish Epilepsy Centre
Each registry plays a different and important role in SLC6A1 research. We encourage families to register with all of them, as each contributes valuable and complementary information.
Please also check whether there are national registries or country-specific data collection initiatives available in your country and register there as well.
If you experience any difficulties during the process, contact us — we are here to help.
4. Participate in Our Symposia
Every two years, SLC6A1 Europe organizes an international symposium bringing together families, healthcare professionals, researchers and industry partners.
These meetings are much more than scientific conferences, they are a place where families can meet others living similar experiences, exchange practical knowledge and feel understood. They are also a unique opportunity to meet the professionals dedicating their work to understanding SLC6A1 and developing future therapies.
Many families leave these meetings feeling more informed, more connected and more hopeful.
We warmly invite you to join us.
The strength of our community lies in the knowledge we gain from sharing experiences, the support we offer one another and our determination to work together toward progress in research.
We are an active, dynamic, commited community, and we are here to walk this journey with you.