Living Well, Ageing Well

As people with bleeding disorders live longer than ever before, ageing well has become an important focus of the EHC’s work. The EHC Ageing Project 2025-2026 Living Well, Ageing Well is a one-year initiative that brings together experts, patients, and caregivers to explore how we can support healthy, active, and fulfilling lives at every stage of ageing for those living with a bleeding disorder.

Through webinars, podcasts, visual resources, and interactive community spaces, the project addresses key topics such as nutrition, mobility, frailty prevention, mental well-being, and the lived experiences of older people with bleeding disorders. Each month features dedicated content, expert-led discussions, or practical tips, all designed to empower individuals to take an active role in their health.

Living Well, Ageing Well project is not just about sharing knowledge — it’s about creating a supportive community where people can learn from one another, share their stories, and shape the conversation on ageing in the bleeding disorders community.

Join us as we redefine what it means to grow older, together!

Episode Formats

Webinars: live conversations with experts. Registrations are open to anyone interested in the topic. The webinars will be recorded and shared on the EHC YouTube channel. No certificate of attendance is foreseen.
Virtual Cafe Talks: guided discussions with healthcare professionals (HCPs). Pre-recorded, no possibility to attend, these episodes will be made available to the public on the EHC YouTube channel. For sharing your questions with the experts, please use the EHC Online Question Box form here.
Peer Pioneer Podcasts: friendly, experience-sharing and supportive discussions among patients about different topics. These podcasts will be made available to the public on the EHC Spotify account. For sharing your questions with the speakers, please use the EHC Online Question Box form here.

Some practical guidelines and main highlights will also be developed based on the discussions when relevant and needed.

EHC Online Question Box

Please share with us any questions you may have about ageing with a bleeding disorder. We will do our best to address the questions during the course of this programme. All questions can be asked anonymously. Ask your question or share your story by clicking the link below: it is a safe place for community members to ask their questions, share worries, and express their hopes.

Ask your questions here

Programme and Speakers

1 October 2025 — World Geriatric Day
20 November 2025 — Virtual Cafe Talk: Ageing Well – Rethinking the Journey with Bleeding Disorders — Speakers: Miguel Crato, Olivia Romero Lux, William McKeown
18 December 2025 — Virtual Cafe Talk: Diet and Bone Health — Speakers: Birkan İlhan and William McKeown. In coordination with the European Geriatric Medicine Society (EuGMS).
22 January 2026 — Webinar: Strong at Any Age – Redefining Frailty Together — Speakers: Susie Shapiro, William McKeown — Registration will open soon. In partnership with the ERN-EuroBloodNet.
23 February 2026 — Virtual Cafe Talk: Ageing Strong – Staying Mobile and Preventing Falls — Speakers: Stephanie Taylor, William McKeown
9 March 2026 — Peer Pioneer Podcast: Adapting Home and Life to Retirement — Speakers: Jim O’Leary, Yannick Collé
30 March 2026 — Virtual Cafe Talk: Adapting Home and Life to Retirement — Speakers: William McKeown, Claire Forde
Apr 2026 — Webinar: Bleeding Disorders and Ageing – Shall I bleed less with age? — Speakers: Sophie Susen, Yesim Dargaud, and William McKeown, — Registration will open soon. In partnership with the ERN-EuroBloodNet.
17 April 2026 — World Haemophilia Day
May 2026 — Webinar: Cardiovascular Issues and other comorbidities — Speakers: Roger Schutgens, Alison Dougall, and William McKeown— Registration will open soon. In partnership with the ERN-EuroBloodNet.
1 June 2026 — Virtual Cafe Talk: Pain and Joint Management — Speakers: Anna Wells, William McKeown
22 June 2026 — Peer Pioneer Podcast:Pain and Joint Management — Speaker: Miguel Crato
28 Aug 2026 — Peer Pioneer Podcast: Relationships and Social Life — Speaker: Shagi Galili, Marko Marinić
21 Sep 2026 — Virtual Cafe Talk:Caring for Ageing – Mental Health & Isolation — Speakers: Christina Burgess, Gloria Rooney, and William McKeown
29 Sep 2026 — EHC Round Table on Cardiovascular Issues in Bleeding Disorders — Brussels, Belgium — Registration for this in-person event will open soon.
1 October 2026 — World Geriatric Day

EHC wishes to thank all the speakers taking part in our programme:

Christina Burgess, HBDCA Founder and CEO, EAHAD Psychosocial Professionals Committee Chair
Yannick Collé, President of AFH (French Haemophilia Society), France
Miguel Crato, EHC President, Portugal
Yesim Dargaud, MD. PhD., Professor in the Clinical Hemostasis Unit and Hemophilia Comprehensive Care Centre at Lyon University Hospitals, France
Alison Dougall, Prof., Head of the Department of Child and Dental Public Health at TRINITY College Dublin and a Consultant/Professor in Special Care Dentistry at Dublin Dental University Dental Hospital, Ireland
Claire Forde, Occupational Therapist, Belfast Haemophilia Comprehensive Care Centre, UK
Shagi Galili, CEO of ALEH (Israeli Haemophilia Association), Israel, EHC Mental Health Working Group Member
Birkan İlhan, Assoc. Prof. MD., Geriatrician, Liv Hospital Vadistanbul, Istanbul, Turkiye
Marko Marinić, PhD., President of Društvo hemofiličara Hrvatske (the Croatian Haemophilia Society), Croatia
Olivia Romero Lux, EHC CEO, France
William McKeown, Dr, EHC Steering Committee Member, Consultant Geriatrician and Stroke Physician, Lead for Undergraduate Ageing and Health at Queen’s University Belfast, UK
Jim O’Leary, Executive Board Member of the Irish Haemophilia Society (IHS), Ireland, EHC European Rare and Inhibitor Network (ERIN) Committee Member
Gloria Rooney, Senior Medical Social Worker, National Coagulation Centre, St James’s Hospital, Dublin, Ireland, EAHAD Psychosocial Professionals Committee
Roger Schutgens, Prof., Head of Department, Center for Benign Haematology, Thrombosis and Haemostasis, UMC Utrecht, Netherlands
Susie Shapiro, Prof., Oxford University Hospital, Oxford, UK
Sophie Susen, MD., PhD., Professor at Department of Haematology and head of the Department of Hemostasis and Transfusion, CHU de Lille, France
Stephanie Taylor, Specialist Physiotherapist, Oxford Haemophilia and Thrombosis Centre, UK
Anna Wells, Advanced Practice Physiotherapist in Haemophilia, Haemophilia, Haemostasis & Thrombosis Centre, Hampshire Hospitals NHS Foundation Trust, UK

The programme is hosted by Daria Camilli, EHC Education and Communication Manager, in coordination with William McKeown.

EHC wishes to thank the ERN-EuroBloodNet for the partnership on the three webinars of this educational and awareness raising programme.

The webinars are hosted by Mariangela Pellegrini, Ph.D, ERN-EuroBloodNet Educational & Patients Program Manager, and Daria Camilli, EHC Education and Communication Manager

Disclaimers

This programme is for informational and educational purposes only. It is developed, created, and delivered by the EHC independently of the industry. If you find any inaccuracies, please report them at [email protected] or [email protected].

Information and materials on this website are intended for general information only. The EHC does not endorse or promote any specific pharmaceutical organisation, drug or other medical intervention; any reference to a product name is not an endorsement by the EHC.