2nd International CTNNB1 syndrome Conference!
Welcome to our 2nd CTNNB1 syndrome conference!
Thank you for joining our flight to improve the lives of patients affected by CTNNB1 Syndrome.
We are pleased to invite you to our 2nd CTNNB1 Syndrome conference & clinical examination of children. The conference will be on 14th and 15th of June and the clinical examination of children on 15th and 16th of June 2024. 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!
The Dragonfly Study
The CTNNB1 Foundation is pleased to announce the first Natural History Study (NHS). This important research project aims to monitor the development of children and adolescents diagnosed with CTNNB1 syndrome.
You can read more about the study here.
The clinical assessments of these children will take place on 15 and 16 June in Slovenia. During these two days, dedicated medical professionals, including doctors and physiotherapists, will perform a series of examinations that include motor functions, neurological examinations, EEGs and blood tests. We are very grateful to the hospital and medical professionals who have volunteered their time and expertise to ensure that there is no additional financial burden on patients.
The deadline for submission of the application for the study has been completed. We thank everyone who decided to participate and are looking forward to seeing them in Slovenia!
This is the work we are doing together for the community today. We wholeheartedly appreciate the support of those who join us in this collaborative effort as we strive to positively impact the lives of those affected by CTNNB1 syndrome. Together we are committed to this cause and only together we will make significant changes in the lives of our wonderful children.
Venue & Accomodation:
The conference will take place in the beautiful city of Ljubljana, Slovenia, at the Grand Plaza Hotel & Congress Centre.
More information here: https://www.grandplazahotel.si
Guests are invited to stay at the Grand Plaza Hotel & Congress Centre at the time of the event. The CTNNB1 Foundation has received a discount price for attendees.
The rooms at the Grand Plaza Hotel & Congress Centre are available at the special rate of 195 EUR per night in a classic double room and 165 EUR in a classic single room for conference attendees (Breakfast included). If a child shares a bed with parents, there is no additional charge. However, if an extra bed is required, an additional fee of €20 per night will be charged. Families with two children have the option of booking a Junior Suite for an additional charge of €110.
Considering the financial considerations that families may face, we are pleased to offer complimentary meals and coffee breaks to our guests in the Junior Suites. As all planned activities, including the conference and clinical examination will take place on site, we encourage families to take advantage of this option.
If you would like to make a reservation at the hotel, please complete the attached booking form and send it to the following email address: firstname.lastname@example.org.
For those arriving by train, Ljubljana is easily accessible from all major European cities. We recommend visiting the DB TravelService for comprehensive information on train routes and schedules.
Travelers choosing to drive to the conference can enter Slovenia through various border crossings with neighboring countries such as Italy, Austria, Hungary, or Croatia. Alternatively, you have the option to rent a car from one of the local car rental agencies. Slovenia’s highways are well-maintained and clearly marked for your convenience. For detailed driving directions and road information, consult resources like ViaMichelin and the national Automobile Association, AMZS.
If you plan to arrive by plane, the primary international gateway is Ljubljana Jože Pučnik Airport, situated just 25 km from Ljubljana. This airport offers convenient access to the region and boasts approximately 240 direct scheduled flights per week from major European hubs. You’ll find a variety of airlines serving this airport, including members of Star Alliance and Skyteam, as well as low-fare carriers like easyJet and Wizz Air. Additionally, there are alternative airports in the vicinity, such as Trieste Airport in Italy (125 km to Ljubljana), Klagenfurt Airport in Austria (120 km to Ljubljana), and Zagreb Airport in Croatia (147 km to Ljubljana).
Airport Transfers to Ljubljana:
We recommend shuttle services by two providers for transfer to or from Ljubljana and nearby airports or cities (Ljubljana Airport, Maribor, Trieste, Venice, Treviso, Zagreb….):
GoOpti offers adaptable low-cost transfers to/from airports and cities, which are instantly confirmed, 100% reliable and carried out by skilled drivers and clean modern vehicles. Further GoOpti transfer information and contacts are accessible following the GoOpti link above.
To enter Slovenia you need a relevant travel document. EU/EEA citizens do not necessarily need a passport, a valid identity card is sufficient. Participants from non EU/EEA countries wishing to enter the Republic of Slovenia need a valid passport, or a valid passport and a visa or residence permit, unless otherwise stipulated by law or international agreement. For more information on whether you need a visa to enter Slovenia, choose your country at the Ministry of Foreign Affairs website. Participants who require a visa to enter Slovenia need to request a letter of guarantee, see below for more information on Visa Application. The letter of guarantee is issued exclusively for the purposes of visa arrangements and does not imply provision of any financial or other support.Information on visas and addresses of embassies is available on the web site of the Slovenian Ministry of Foreign Affairs (https://www.gov.si/en/topics/entry-and-residence/). In case you apply for a visa at an embassy, please let us know so that we can provide you with a letter. Please send us an email to: email@example.com. Participants who already possess a valid Schengen visa type C or a valid residence permit issued by another Schengen country do not need to obtain an additional visa to enter Slovenia.
For a visa application, please follow these steps:
- Register for the conference and pay the registration fee.
- Fill in the form (download letter_guarantee_CTNNB1) and send your request for letter of guarantee to firstname.lastname@example.org
- After we have received the filled-in form we will issue a letter of guarantee and send you a copy by email and an original by post. Should you require the letter of guarantee immediately please inform us about it. We can arrange shipping by DHL. After you have received your letter of guarantee contact the embassy that can issue your visa.