Our Roadmap: Six Strategic Goals

The mission of AHC Europe is to support and connect AHC families and to accelerate research into effective treatments for AHC. To help turn this mission into concrete action, a clear Roadmap has been developed, structured around six key pillars that reflect the organisation’s core priorities. Together, these pillars provide a shared framework for strengthening the association, supporting national organisations, advancing research, improving care, and amplifying the voice of patients and families.

In 2026, there will be a strong focus on structural work across these six pillars to lay the foundations for more effective and sustainable international collaboration. Learn more about our six strategic goals, and get in touch if you would like to contribute your ideas or get involved. We look forward to working with you to shape the future of AHC Europe and support the wider AHC community.

1. Establish a Strong and Sustainable AHC Europe

AHC Europe aims to be a visible, well-structured, and trusted European organisation that supports patients, families and national associations.

Key actions include:

• Increasing awareness of AHC Europe and its role through a dedicated campaign starting in 2026.
• Publishing a quarterly newsletter to keep all stakeholders informed.
• Building a comprehensive, anonymised overview of AHC patients in Europe to support research, advocacy and long-term planning.

2. Strengthen European AHC Associations

We support national AHC and ATP1A3 associations by encouraging knowledge sharing and practical collaboration.

Key actions include:

• Quarterly themed meetings to allow associations to exchange experiences and best practices.
• Share successful initiatives through the newsletter and website, helping associations apply proven approaches locally.

3. Foster European and Global Collaboration

AHC Europe works closely with European and international AHC organisations to build a unified international patient community and ensure a stronger and coherent patient voice worldwide.

Key actions include:

• Annual in-person meetings at ATP1A3 symposium.
• Regular online coordination meetings.
• Foster joint initiatives towards researchers, healthcare professionals and external stakeholders.

4. Advocate for AHC Patients and Families

AHC Europe should represent the interests of AHC patients within European rare disease organisations and networks, such as EpiCare, EURORDIS, the IAHCRC and the ATP1A3 Symposium.

Key actions include:

• Identify relevant European bodies where AHC representation is essential.
• Appoint and support AHC Europe patient representatives.
• Ensure clear communication back to families and national associations on key developments and outcomes.

5. Promote and Accelerate Research

Advancing research is central to our mission.

Key actions include:

• Establish a scientific and medical committee of European clinicians and researchers.
• Define shared research priorities.
• Create an online collaboration platform where researchers can request partnerships, patient access or funding.
• Publish an up-to-date overview of ongoing research projects.
• Support European patient organisations in international research fundraising campaigns.

6. Improve Treatment

AHC Europe aims to improve patient outcomes by supporting the need for early diagnosis and appropriate care throughout the patient’s life.

Key actions include:

• The development and dissemination of European treatment guidelines.
• Collaboration between international experts and patient representatives.
• The creation of a European medical network, connecting reference centres and specialists.
• Dissemination of guidelines and updates through professional networks, newsletters and meetings, such as the annual ATP1A3 Symposium.