European Aniridia Leadership & Collaboration Academy (EALCA) 2026
Building the Next Generation of Leaders in the Aniridia Community
From 17–19 April 2026, alongside the 8th European Aniridia Conference in Sofia, Bulgaria, 12 young people and emerging leaders from across Europe and beyond gathered for the European Aniridia Leadership & Collaboration Academy (EALCA). The Academy brought together people affected by aniridia with a shared goal: to develop the skills, confidence and connections needed to strengthen the global aniridia community.
Over three intensive days, participants explored leadership, networking, advocacy, project management, communication, and collaboration through practical workshops, interactive exercises, and discussions with experienced leaders and patient advocates. The programme was designed not only to teach skills, but to apply them immediately to real-world challenges facing the aniridia community.
Learning by Doing
A central feature of EALCA was the development of participant-led project ideas. Participants pitched innovative proposals ranging from international mentoring programmes and storytelling platforms to podcasts, youth camps, self-help groups and accessibility tools. Through collaborative discussions and voting, the group selected key ideas to explore further and learned how to transform concepts into achievable goals using project management tools, stakeholder mapping and task planning.
The Academy also included sessions on:
- Overcoming shyness and language barriers
- Networking and relationship building
- Public speaking and presentation skills
- Advocacy for oneself and the organisation
- Project planning and management
- Partnership and stakeholder engagement
- Internal and external communications
- Reflecting on and sharing what had been learned
Participants were encouraged to step outside their comfort zones by networking with the scientists and clinicians at the main conference and building lasting international friendships.
Measurable Impact
The pre- and post-self-assessment surveys demonstrated significant improvements in participants’ confidence and leadership skills. Participants reported increases in:
♦ Public speaking confidence: +1.3 points
♦ Starting conversations with new people: +1.1 points
♦ Expressing ideas verbally and in writing: +1.1 points
♦ Talking about their disability with new people: +1.1 points
♦ Taking initiative and leadership: +0.9 points
♦ Collaborating with team members: +0.9 points
♦ Managing the impact of visual impairment in conversations: +0.6 points
After EALCA:
♦ 87.5% of participants rated their future public speaking confidence as 4 or 5 out of 5.
♦ 75% felt confident taking initiative and leading.
♦ 87.5% felt comfortable collaborating with fellow team members.
♦ 100% agreed that their time at EALCA was well spent.
What Participants Said
The feedback highlighted the personal and professional impact of the Academy:
“My confidence in communicating with new people has grown a lot.”
“Meeting so many people from different countries and backgrounds pushed me out of my comfort zone—in a good way.”
“I learned many new and interesting things about project management, communication strategies and advocacy.”
“It made me feel more confident, motivated and included.”
“Hearing everyone’s ideas and stories reminded me that we are stronger together.”
Many participants identified networking, advocacy training, project management skills and meeting others with similar lived experiences as the most valuable aspects of the Academy.
Tutor Reflections
Tutors and facilitators rated EALCA highly, with 75% awarding the maximum score and the remaining 25% awarding 4 out of 5. They praised the participants’ enthusiasm, engagement, and suitability and highlighted the importance of investing in younger generations of leaders within the aniridia community.
One tutor commented:
“EALCA is important for the future of the Aniridia community.”
Others emphasised the value of bringing together people who share a common goal: improving the lives of those affected by aniridia and building stronger national and international networks.
Beyond Sofia
EALCA was never intended to end when participants returned home.
Participants wrote a personal development plan for themselves, which will be queried in the following months.
Each participant was matched with a mentor from among the leaders of European aniridia associations. We hope these relationships will blossom, helping mentees further develop their abilities and continue towards becoming the mentors’ eventual successors.
The cohort has also continued their chosen project. They have produced a sample of an audio interview with a young person with aniridia. They plan to publish this for Aniridia Day 2026 and later the full version. Each participant received a certificate recognising their commitment to learning, collaboration and leadership within the aniridia community.
Looking Ahead
The success of EALCA 2026 demonstrated the tremendous potential of the next generation of leaders in the aniridia community. Participants arrived as individuals from different countries, backgrounds and experiences. They left as a connected network of future advocates, volunteers and leaders equipped with new skills, greater confidence and a shared commitment to improving life for people with aniridia.
As one participant reflected, perhaps the greatest achievement of EALCA was simple:
“Meeting people like me.”
The journey has only just begun.
