This World Haemophilia Day, the EHC marks the occasion not only with reflection, but with a commitment to the future. As part of its ongoing Living Well, Ageing Well project, the EHC is launching a series of initiatives that place the lived experience of ageing with a bleeding disorder at the centre of the conversation.

People with haemophilia and other bleeding disorders are living longer than ever before. Decades of scientific progress, patient advocacy, and cross-border collaboration have redefined what it means to live with these conditions. But longer lives bring new responsibilities: for healthcare systems, for policymakers, and for our community itself.

A letter sealed in 2026, to be opened in 2039

Today, the EHC is physically sealing a time capsule at its office in Brussels. Inside is a letter to the future, written in 2026, to be opened on World Haemophilia Day 2039, when the EHC will mark its 50th anniversary.

The letter documents the current state of care for people with bleeding disorders across Europe: the achievements made possible by prophylaxis, innovative therapies, and multidisciplinary care; the inequalities and gaps that still need to be addressed; and the hopes and aspirations of the community for the next 15 years. It also carries something deeply personal: the words of community members who were invited to contribute their reflections, promises, and wishes for the generations that will follow.

Voices from the community: wisdom and promises across generations

As part of this year’s campaign, the EHC invited community members to share their perspectives on ageing from two different vantage points. Younger members were asked: “What is your promise for healthy ageing?” More senior members were invited to reflect: “What do you wish you had known when you were younger?“

Their answers speak to the breadth of experience within the bleeding disorders community and to the importance of listening across generations.

“Looking back, I wish I had known that taking better care of my joints when I was younger would give me a longer and more active life with fuller participation in the activities I enjoy.” — Jim O’Leary, 70 years old

“My promise for my healthy ageing is to work my hardest to stay independent and active as long as possible and encourage others in the bleeding community to do the same!” — William McKeown, 34 years old

“My promise for my healthy ageing is to remember that being a carrier does not mean being unaffected, and to care for myself accordingly.” — Anja, 24 years old

New podcast: ageing well with a bleeding disorder

In collaboration with the European Patients’ Forum (EPF), the EHC is today releasing a new podcast episode on ageing well with a bleeding disorder and the EHC Letter to the Future campaign. The episode features Dr William McKeown (EHC Steering Committee Member, Geriatrician).

Listen to the episode here.

Living Well, Ageing Well: the project continues

Today’s campaign is part of the EHC’s broader Living Well, Ageing Well project, which launched in October 2025 and runs through to World Geriatric Day in October 2026. Each month, the project brings together patients, caregivers, clinicians, and experts to explore what healthy, active, and fulfilling ageing looks like for people with bleeding disorders.

The project page already hosts a rich library of resources (webinars, peer podcasts, virtual café talks, and practical guides) on topics including nutrition and bone health, frailty prevention, mobility, fall prevention, and adapting home and life to retirement. Upcoming sessions will address pain and joint management, cardiovascular issues, and mental health. All resources are freely available and open to anyone interested.