On 24 March 2026, AHC Europe hosted its first Thematic Meeting, bringing together representatives from patient associations and family networks across Europe and beyond. Participants from Portugal, Denmark, Belgium, Germany, France, the Netherlands, Bulgaria, Finland, Italy, Spain, Sweden and Brazil joined an open and constructive exchange focused on one essential question: how can we better connect families living with Alternating Hemiplegia of Childhood (AHC)?
The meeting created an important opportunity to share experiences, discuss common challenges, and learn from the many different ways associations are supporting their families in their countries.
1. Introducing our associations
Each country had the opportunity to present its current situation, structure and priorities.
Long-established associations such as France (1991) and Italy (1999) shared their experience of supporting families over many years, while newer organisations such as Portugal, founded in November 2025, and Sweden, founded in 2020, described the momentum of building newer networks.
Association sizes vary considerably, from countries supporting one or two families to larger groups representing more than 60 families. Several organisations also support families affected by related ATP1A3 conditions, reflecting an increasingly inclusive approach.
Despite differences in size, structure and resources, all associations share the same commitment: reducing isolation, providing practical help, and ensuring families feel connected to a wider community.
2. How families stay connected on a daily basis
Daily communication remains one of the most powerful tools for reducing isolation and sharing practical support. The associations present described using a range of tools to stay in touch with families, including:
- WhatsApp groups
- Facebook and Messenger communities
- Email newsletters
- Websites and social media channels
- Zoom and other online meeting platforms
Many participants noted that WhatsApp has become one of the most effective tools for fast communication, peer support and sharing urgent questions between families. Social media also plays an important role in raising awareness, sharing research news, and promoting events.
Several associations emphasised the importance of a website to reach newly diagnosed families searching for information and support.
3. Face-to-face meetings
While digital communication is valuable, participants strongly agreed that in-person meetings remain irreplaceable.
Across Europe, associations organise family weekends, annual meetings, day events and informal gatherings. These meetings often combine social connection with educational sessions led by clinicians, researchers, psychologists or therapists.
Several countries organise annual family weekends or dedicated gatherings:
- France hosts a two-day annual event with medical presentations, family activities and its AGM
- Italy organises a yearly weekend gathering in Genoa linked to the university centre
- Germany holds a four-day retreat in a specialised accessible centre focused on sharing, activities and community.
- The Netherlands/Belgium association runs a summer Family Day and will host its first Consultation Day in Antwerp in July 2026.
- Denmark previously organised family weekends and now increasingly offers one-day events and outings, and is working together with Sweden on a Nordic family meeting.
Spain shared successful gatherings linked to the ATP1A3 Symposium in Barcelona and specific project visits, while Brazil currently meets once every trimester.
Many associations also provide financial assistance for accommodation, meals or activities to help families attend.
4. Other ways to build community
Beyond formal meetings, associations are creating year-round opportunities for connection through
- Webinars and online educational sessions
- Parent discussion groups led by psychologists
- Shared meals and virtual social activities
- Joint events between neighbouring countries
- Awareness campaigns for AHC Day and Rare Disease Day
- Fundraising events that also bring communities together
5. Common challenges in connecting families
Although every country has its own unique challenges, many associations encounter similar obstacles when attempting to connect families. These include long travel distances, medical limitations that make travel difficult, financial constraints and overall caregiver fatigue. Associations also highlighted challenges such as limited volunteer capacity, difficulty reaching families who have recently been diagnosed, and the need to address the very different expectations of people at different stages of their journey.
At the same time, practical approaches are emerging to address these barriers. AHC France is a prime example of this, focusing on inclusion and accessibility to ensure that as many families as possible can participate. Their model combines flexible participation options, hybrid formats including remote access, careful geographical planning of events and financial support for families in need. This demonstrates how adapting formats and reducing participation barriers can significantly strengthen engagement and community connection.
6. Ideas and priorities for the future
The meeting also generated practical suggestions for AHC Europe’s future work.
Participants proposed:
- A visible country contact list on the AHC Europe website
- Faster support pathways for newly diagnosed families
- Sharing successful ideas between associations
- Greater multilingual support
- Collaboration between larger and smaller countries
- Continued thematic meetings to exchange experience and solutions
Existing examples already demonstrate this spirit of cooperation, including Germany’s support for neighbouring German-speaking families (in Italy and Austria), France’s support to Morocco and Wallonia, the French-speaking region in Belgium, Portugal’s connection with Brazil and Spain’s connection with the Spanish-speaking community in Latin-America.
A strong start for AHC Europe’s Thematic Meetings
Participants described the first Thematic Meeting as constructive, inspiring and a symbol of unity within the European AHC community.
Words shared at the close of the session included:
Hopeful. Inspiring. Together. Stronger. Unity.
We warmly thank all representatives who contributed their time, ideas and experiences. Every country brought valuable perspectives, and together they showed the strength of our community.
We look forward to welcoming you to the next Thematic Meeting on 23 June when we will discuss Finance and Fundraising.
You can download presentations shared by participating associations here:
You can read the meeting minutes here: