Newsletter Spring 2026
In this article you will find the most recent updates for ADNP Europe
5/27/20263 min read
Dear Friends, parents, and supporters of the ADNP Community,
We have been silent for some time now, but this does not mean we have been inactive.
On the contrary, the last couple of weeks have been quite busy on our end and we have made tremendous progress in multiple areas. This newsletter will give you an insight into our most recent developments and what’s coming next.
Please share any feedback or questions through our website or our dedicated groups on Facebook and WhatsApp. Enjoy reading!
Administrative update
We are pleased to announce that we are now fully registered as a not-for-profit organization under Belgian law (applicable to all EU countries) under ‘Association Européenne pour le syndrome ADNP’, ‘ADNP Europe’ in short. We have also just opened a bank account and are therefore fully operational, with all related rights and duties linked to our status. All details can be found on our website.
Membership Campaign – WE NEED YOU
Now that everything is set up, we are ready to register officially all stakeholders interested in joining the Association. Per our statuses, there are two types of memberships available: adhering members (free of charge) and effective members (50 EUR yearly fees). The main difference resides in the voting right to our annual General Assembly that will take place for the first time in 2027.
Memberships are valid for one calendar year starting on the date of registration or payment and open to individuals as well as organizations.
EVERY MEMBERSHIP COUNTS as the more we are, the better we can fulfill our mission so please, click on the link here, register, and promote registration on your own national and local networks. Not only will this give weight to ADNP EUROPE in promoting our interests, but it will also enable us to consolidate a global registry of ADNP families.
Membership is open to anyone globally so do not limit yourselves to European Countries.
Rest ensured that your data is kept in accordance with EU regulations on data privacy.
Scientific Committee
Our Scientific Committee is now formed and we are proud to have such distinguished members of the Scientific Commmunity on Board to help, support and advise (find details here).
The Committee held its first meeting on May 1, 2026. We discussed the aim and mission of the Committee and the 2026 Action Plan.
The scientific Committee will help us in many ways including developing relevant ADNP information for families, sharing ongoing developments and research in the field of ADNP, developing a patient registry specific for ADNP, and supporting ADNP EUROPE in seeking funding opportunities to develop research programs.
The next Committee meeting is planned in September 2026, and we hope to share more updates at the conference accordingly.
3rd ADNP CONFERENCE – September 9-11, 2026 - SAVE THE DATE
A first concrete action of our Scientifc Committee will be the upcoming ADNP Conference to be held in Antwerp, Belgium, in September 2026 and the dedicated family day to be held on September 11 (SAVE THE DATE). All details are available HERE
Parents Support Group
Although we are working hard for the success of ADNP EUROPE, any help to support is most welcome and that’s where you come into play...
The first ADNP Parents Community call was held on 14 April 2026 and on that occasion, we shared some thoughts about How you can help and support. There are multiple roles to play from ADNP Europe Community Manager (Social Medias, Whatsapp), Website maintenance and update, Members administration, Support in research for funding opportunities with public institutions and private stakeholders etc…
Some parents already expressed interest to support during this call, and we thank you for that! Now that we are a bit more mature in our organization, we stand rerady to answer these calls 😊 So please reach out!
Any help is welcome so in case you are interested to help, please contact us directly at info@adnpeurope.eu
We are excited about the progress achieved to date and what’s coming soon. Stay tuned for more updates!
On behalf of ADNP EUROPE Board,
Antoine Bourgoignie,
Vice-President and Secretary General