To mark this year’s World Haemophilia Day, an international remembrance to raise awareness about haemophilia and other rare bleeding disorders, the EHC will host a virtual World Haemophilia Week from 12 to 17 April.
We will release a podcast episode discussing and reviewing an ongoing and relevant issue for the bleeding disorders community each day. Listen to the full playlist on soundcloud: https://soundcloud.com/european-haemophilia-consortium/sets/ehc-world-haemophilia-week.
Today, we also have Jo Eerens, EHC Steering Committee Member, welcoming us and highlighting the various topics we will discuss throughout our World Haemophilia Week podcast celebrations!!
Monday, 12 April – Community Day
Today’s podcast puts the von Willebrand Working Group in the spotlight.
Join us to hear Manon Degenaar Dujardin; EHC SC Member and Chair of the VWG, Prof. Michelle Lavin; Consultant Haematologist at the National Coagulation Centre in Dublin and Fiona Brennan, EHC Community Programmes Officer discuss the newly released international VWD Guidelines on Diagnosis and Management, and also their hopes and expectations for treatment and care in the future.
Tuesday, 13 April – Technology Day
Welcome back for Day 2 of our podcast series!
Today’s podcast will focus on the future with regards to technology and access to healthcare. How has our healthcare changed during COVID, are these changes here to stay? Miguel Crato, EHC SC Member, Prof. Waander van Heerde; Chief Scientific Officer at Enzyre and management team member at the HTC-NEM, Prof. Kate Khair; Director of Research at Haemnet and Brian O’Mahony; CEO of the Irish Haemophilia Society discuss topics such as Home delivery, Tele-medicine, Hub and Spoke Models and Registries. Join us for a fascinating discussion on the future of technology and how to improve access to care.
Wednesday, 14 April – Science Day
Welcome to day 3 of World Haemophilia Week. Today is Science Day! Prof. Flora Peyvandi, Chair of EAHAD and EHC MAG member, Declan Noone, EHC President and Robert Klamroth, Director of the Comprehensive Care Haemophilia Treatment Center at the Vivantes Clinic, Berlin will today discuss the possibilities in the future for haemophilia treatment, their hopes and expectations.
Thursday, 15 April – Public Policy Day
Today’s podcast is all about public policy – join us as we will delve into the public policy work of the EHC and talk about projects influencing the rare disease space. Introduced by Diana Lighezan, EHC SC Member, Nastassia Kisialeva and Laura Savini, EHC Public Policy officers, explain the work the EHC does to advocate for equal access to healthcare for all. They are joined by Flaminia Macchia from Rare Disease International (RDI), who discusses RDI’s advocacy efforts and their innovative approach to rare diseases as a human rights issue.
Friday, 16 April – EHC Day
Welcome to the last podcast of World Haemophilia Week. Last, but not least! Today is EHC Day and we will be hearing from Amanda Bok, CEO and Naja Skouw Rasmussen, recently appointed as Think Tank Officer. They will discuss the aim of and the thinking behind the newly created Think Tank role and what to expect in the future.
Saturday 17 April – World Haemophilia Day – Closing video
Happy World Haemophilia Day – wishing our community across Europe and the world a wonderful, safe and connected WHD 2021!!
Don’t have time to listen to all of our podcasts? Then get a quick recap of the week by watching the short closing video.