Following the success of our first thematic meeting on connecting families, AHC Europe recently brought together representatives from AHC associations across Europe—and Brazil — for its second thematic meeting, focusing on finance and fundraising.
Sharing fundraising ideas across Europe
One of the main goals of these thematic meetings is to learn from one another. Every country has developed its own approach to fundraising, often based on local opportunities, volunteers and community engagement. By sharing these experiences, associations can discover new ideas that may also work in their own country.
Some of the initiatives presented during the meeting included:
Community fundraising events: charity walks, cycling challenges and participation in local marathons.
Membership programmes: encouraging families and supporters to become members and contribute through annual fees.
Recurring donor programmes: supporters make monthly contributions, creating a stable source of income.
Awareness campaigns: documentaries, social media campaigns and LinkedIn outreach to reach new audiences.
Fundraising through personal networks: birthday fundraising campaigns, employer-supported donations and partnerships with local organisations or sports clubs.
Creative merchandise: teddy bears, calendars, artwork and other products that raises awareness while generating income.
Government and public funding opportunities: in Brazil, research funding was successfully secured through a senator's budget allocation.
Although every association has its own situation and resources, the meeting showed that many successful fundraising activities have one thing in common: they combine raising awareness about AHC with actively involving families, supporters and the wider community.
From raising funds to funding the right research
One of the meeting's most significant conclusions was that fundraising alone is not enough. As more organisations succeed in raising funds, the challenge increasingly becomes identifying high-quality research projects that can make the greatest difference for the AHC community.
Without a clear process for evaluating research proposals, it can be difficult to determine which projects are most likely to make a meaningful impact. This also makes conversations with companies, institutional donors and grant providers more challenging, as they increasingly want to understand exactly how their contribution will advance research.
To help ensure that fundraising translates into meaningful scientific progress, participants discussed establishing a European Scientific and Research Committee. Such a committee could:
independently review research proposals;
help identify promising research projects;
provide scientific guidance to national associations;
support coordinated European funding decisions;
strengthen confidence among families, donors and researchers.
The ongoing research project in Leiden was highlighted as an example of an established project that associations could support.
Working together strengthens everyone
By sharing fundraising experience and working together to identify the most promising research opportunities, Europe's AHC associations are building a stronger, more coordinated approach to accelerating progress. These thematic meetings demonstrate that collaboration not only helps associations learn from one another, but also maximises the impact of every euro raised for the AHC community.
Looking ahead
The second thematic meeting once again showed how much knowledge exists within the AHC community. The meeting wasn't simply about sharing ways of raising more money — it was about ensuring that fundraising efforts across Europe are coordinated and directed towards the most impactful research. Together, we can maximise the impact of our fundraising efforts and accelerate progress towards better treatments — and ultimately a cure — for everyone living with AHC.
The third AHC Europe Thematic Meeting will take place at the Family Meeting on 24 September in Paris. The meeting will focus on practical experiences and what may help prevent or reduce AHC symptoms. In this way we continue our series of knowledge-sharing sessions designed to strengthen collaboration between AHC associations across Europe.