ADNP EUROPE Launch Conference Press Statement

ADNP Europe Launches to Unite Research, Families and Advocacy Across Europe

A new European association to accelerate awareness, collaboration and research

With the official launch of ADNP Europe, a new non-profit association has been established to connect families, clinicians and researchers across the continent. Registered under Belgian law, the organisation aims to raise awareness of ADNP syndrome, strengthen collaboration and accelerate progress towards improved care and future treatments.

The launch marks a coordinated step forward for a community that has long operated in fragmented national networks. By creating a European-level structure, ADNP Europe seeks to bridge the gap between local patient groups and the broader scientific and policy landscape.

The full conference can be viewed here:

https://www.youtube.com/watch?v=3eo3h6Chjcw

Building a shared European vision

ADNP Europe was created with a clear mission: connect families, support research and ensure access to reliable information and care developments. The organisation positions itself as a central hub that gathers insights from scientists and lived experiences from families, translating both into coordinated action.

The founders describe the association as a “lighthouse” for the community. A central point of guidance while each family navigates its own journey. This vision reflects the ambition to align stakeholders around shared goals: better care, stronger data and sustainable treatment pathways.

Structured governance, transparency and compliance are core principles. A board elected by a general assembly will oversee strategy, finance and operations, ensuring accountability to members and public authorities alike.

A complementary role in the European ecosystem

ADNP Europe does not aim to replace national parent associations. Instead, it fills a structural gap at the European level, providing the scale and coordination needed to represent the community more effectively in policy, funding and research initiatives.

By bringing together families from all over the world, national organisations and partner groups, the association seeks to create the critical mass required to influence public authorities and unlock funding opportunities. Membership is intentionally accessible, with a possibity for free participation to ensure no financial barrier limits involvement.

This collective approach is essential to strengthening visibility and credibility when engaging with institutions such as the European organisationd and national funding bodies.

A strong scientific foundation

A key differentiator of ADNP Europe is the early establishment of an international scientific committee. The committee includes leading clinicians and researchers involved in the discovery and ongoing study of ADNP syndrome, providing immediate scientific depth to the organisation’s activities.

Core contributors are affiliated with the University of Antwerp, alongside international experts and clinicians. Their involvement ensures that research priorities, data collection and communication with families remain scientifically robust and clinically relevant.

President Kelly Verbruggen highlighted the importance of a unified European association: “Coordinated collaboration accelerates understanding and ultimately improves support for children and families.”

What distinguishes ADNP Europe?

Several elements define the organisation’s unique position:

● A pan-European structure designed to complement national initiatives

● Direct integration of families, researchers and clinicians

● A commitment to transparency, governance and regulatory compliance

● Early establishment of a scientific committee with leading experts

● A strategic focus on awareness, data coordination and research funding

Central to this strategy is the development of a (complete, worldwide) patient registry, built in close coordination with researchers and fully aligned with GDPR and cross-border data regulations. This registry will enable clinicians to access structured, privacy-compliant data while preserving strict separation between medical records and membership information.

Strategic priorities and next steps

Following the launch, ADNP Europe has outlined a phased roadmap focused on sustainable growth and impact.

Key priorities include expanding membership, establishing the patient registry, strengthening its role as an information hub and supporting ongoing clinical research and trials. The organisation also plans to help organise the scientific and family conference in September in Antwerp to facilitate direct exchange between researchers and the community.

In parallel, ADNP Europe will pursue EU-level recognition and tax-exempt status to enable larger-scale fundraising and donations. A long-term objective is to secure substantial funding initiatives, including potential academic chairs dedicated to ADNP research.

A collective call to action

The launch of ADNP Europe represents more than the creation of a new organisation. It is the start of a coordinated European movement designed to connect expertise, amplify advocacy and accelerate scientific progress.

By uniting families, clinicians, researchers and institutional partners, ADNP Europe aims to create a strong, credible and collaborative platform capable of driving meaningful change across the European landscape.

About ADNP and Helsmoortel-Van der Aa Syndrome

ADNP, short for Activity‑Dependent Neuroprotective Protein, is a gene crucial for brain development and gene regulation. Mutations in ADNP disrupt normal neural development and lead to Helsmoortel‑Van der Aa syndrome (HVDAS), a rare neurodevelopmental disorder. HVDAS is characterised by eg developmental delays, speech and language difficulties, low muscle tone, and behavioral issues often within the autism spectrum. In short, mutations in ADNP directly cause HVDAS.