


3rd International CTNNB1 syndrome Conference
We are pleased to invite you to our 3rd CTNNB1 Syndrome conference & clinical examination of children. The conference will be on the 19th and 20th of June and the clinical examination of children from the 16th to the 19th of June 2025. Your presence will be invaluable as we come together to improve the lives of all patients affected with CTNNB1 Syndrome. This event marks an important milestone for our community as we recently successfully completed preclinical studies and have initiated our manufacturing process. Over the conference days, we have put together a program with the main focus on the gene replacement therapy, clinical readiness and updates on other treatment solution programs. As many of the symptom-related topics were already covered last year, this year we want to focus particularly on the rarer of the rare, including heart defects and epilepsy.
We look forward to the opportunity to catch up with familiar faces, give you a warm hug and listen to your experiences. Together, we will continue to drive progress and foster a supportive community committed to making a positive impact on the lives of those affected by CTNNB1 syndrome.
Join us on this journey of knowledge, connection and empowerment. Together we can make a difference!
Programme
In preparation – stay tuned for updates!
If you would like to see what last year’s program looked like, click here.
The Dragonfly Study
(Bilbao information only available currently)
The CTNNB1 Foundation is pleased to continue the Dragonfly Natural History Study (NHS), which monitors the development of children and adults diagnosed with CTNNB1 syndrome.
You can read more about the study here.
Clinical assessments in Bilbao:
- Date: June 16-19, 2025
- Location: Hotel Catalonia Gran Via Bilbao****
During these days, dedicated medical professionals, including doctors, physiotherapists, and psychologists, will perform a series of assessments, including:
- Neurological examinations
- Motor function evaluations
- Cognitive and language assessments
We are deeply grateful to the medical professionals who volunteer their time and expertise to ensure that there is no financial burden on families.
Application Deadline: February 14, 2025
We appreciate all families who have signed up and look forward to seeing you in Bilbao!
Practical information
Venue:
- Conference location: The conference will take place in the beautiful city of Bilbao, Spain at the University of Deusto. More information here: https://www.deusto.es/en/home.
- Lunch Venue: Lunch during the conference will take place at the beautiful Jauregia restaurant. More information here: htttps://Jauregia.com/En/.
- Clinical examination venue: The Dragonfly study will take place in Hotel Catalonia Gran Via Bilbao**** .
Accomodation:
Please feel free to book a room either through these selected hotels, or Airbnb or booking reservations.
Hotel Catalonia Gran Vía Bilbao ****
Travel Information:
By plane:
The Bilbao Airport is 12.5 km from the center of Bilbao. The Bizkaibus line (A3247) connects the Termibus bus station in Bilbao with the airport, with stops at Gran Vía 79, Plaza Moyua Osaguna/Hacienda, and Alameda Recalde 11. Buses depart every 15 minutes from the arrivals terminal, where there is also a customer service and ticket sales desk. For more information: https://www.aena.es/es/bilbao/como-llegar/autobus.html
Another option is to take a taxi at the airport. In the arrivals terminal, you will find taxis from the company Asociación Auto Taxis Femade. You can reserve a taxi by phone at (+34) 944 800 909 or by filling out the reservation form on their website www.taxisaeropuertobilbao.com. The approximate price from the airport to the center of Bilbao is 24 – 29 €. Map of the taxi stop: https://www.aena.es/es/bilbao/como-llegar/taxi.html.
Arrival by plane at Barcelona or Madrid:
If you arrive by plane in Barcelona or Madrid, the two largest cities in Spain, you have several options to reach Bilbao. The most convenient option is to take another flight at the same airport to Bilbao Airport. Other options are as follows:
⦁ From Madrid: The best option is the Alsa bus, which goes from Madrid Barajas Airport Terminal 4 to Termibus (Bilbao Bus Station) in the city center. The bus journey takes approximately 4 hours and 30 minutes. For more information: https://www.alsa.es/ruta/madrid-bilbao.
⦁ From Barcelona: There is no direct option from Josep Tarradellas Airport. However, from the Sants Train Station in Barcelona, which is connected to the airport, there are daily Alvia trains to Abando Indalecio Prieto Train Station (Bilbao). The train journey takes approximately 7 hours. For more information: https://www.renfe.com/es/es/experiencias/rutas/barcelona-bilbao.
Documents to present at the border:
⦁ Passport or valid travel document: Citizens of the European Union do not explicitly need a passport; an identity card is sufficient.
⦁ Visa: For certain nationalities, a valid and current stay visa is required. A stay visa is not necessary if you have a valid residence permit or a valid long-stay visa issued by a Schengen State. The nationalities that require a stay visa can be found at the following link:
https://eur-lex.europa.eu/legal-content/ES/TXT/PDF/?uri=CELEX:32018R1806&from=EN
⦁ You may be asked for documents that justify the purpose of your trip and the conditions of your planned stay. Presenting the return flight ticket is enough.