Dear Readers,
We are delighted to bring updates on EHC activities from February and March in a new edition of the EHC Newsletter.
As announced in our last newsletter, some organisational changes are undergoing at EHC. Our CEO, Amanda Bok, who announced her departure earlier in January, left the organisation at the end of February. We wish to acknowledge Amanda’s accomplishments and work in a short piece we have written, and you can read it here below. Meanwhile, the recruitment process for a successor is still ongoing. In the meantime, Ms Shinoh Lee joined EHC as a Team Manager to guide EHC staff in their day-to-day activities.
We are delighted to inform our readers that the EHC Conference registrations on 6-8 October in Zagreb, Croatia, are now open! We have also included dates for upcoming EHC events in the newsletter, such as the World Haemophilia Week (17-21 April) online celebrations, including an online webinar (19 April, 15.00 hrs CET) on liver health post-HCV clearance and in the context of gene therapy.
There are many ongoing changes in European health policy, and we are delighted to present the latest issue of the European health policy review. We also include the link to an article reporting on the EHC Think Tank workstreams and, finally, an interview in the context of our #thisway campaign to promote the safe practice of physical activity.
Our committees have also been busy. The newly formed European Rare and Inhibitor Network (ERIN) has published a manifesto on unmet needs for people with rare bleeding disorders. The von Willebrand Working Group prepared the first-ever European awareness campaign on 1 February. Finally, our Women and Bleeding Disorders Committee has released a video on the European Principles of Care for Women and Girls with Bleeding Disorders to mark International Women’s Day, observed on 8 March.
Finally, our partner, EURORDIS – Rare Disease Europe, is holding a training opportunity for patient advocates. Read more below.
We hope that you will enjoy this newsletter, and as always, we remain at your disposal for any feedback or questions.
The EHC team
EHC News
In March, Ms Shinoh Lee joined the EHC as its team manager. Shinoh brings two decades of experience in project and operations management to the team. Below, you can read a more in-depth interview with Shinoh, her background and her new role with EHC. Please join us in welcoming Shinoh to the community!
EHC 2023 Conference registrations are open!
We are delighted to let you know that the registrations for the EHC 2023 Conference on 6-8 October in Zagreb, Croatia are officially open!
We invite you to visit our website to consult the preliminary programme. Early bird registration fees will apply until 17 July 2023.
The EHC Think Tank published an article in the Journal of Haemophilia Practice on ‘Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Registries, the Hub and Spoke Model and Patient Agency.’
Participants continued on from the work of the first workshops and identified directions of ongoing focus, defined achievable milestones, and explored the enablers and ‘constraints’ to achieving these.
The EHC Think Tank published an article in the Journal of Haemophilia Practice on ‘Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Registries, the Hub and Spoke Model and Patient Agency.’
Participants continued on from the work of the first workshops and identified directions of ongoing focus, defined achievable milestones, and explored the enablers and ‘constraints’ to achieving these.
The exhibition is coming to you!
In 2022, the EHC Multimedia exhibition “Open the Door to Another Reality” saw its launch in Brussels alongside the EHC Leadership Conference. It has travelled to Copenhagen for the EHC Conference 2022.
Now has come the time for it to travel the roads of Europe and visit you, our National Member Organisations. New stories will be added to the exhibition in 2023 to ensure a broader representation of our community and hear the stories of everybody affected by a bleeding disorder from all corners of Europe!
We warmly invite you to welcome the exhibition at the events of your NMO so that your community can witness the history of the bleeding disorders community and add their own stories!
Please contact Kristine Jansone at the EHC office for questions and practical arrangements!
Applications are welcome throughout the year
We would like to remind our NMOs that the EHC Activity Grants and Physical Activity Grants are available to support their work. Applications are welcome throughout the year.
For information about the application process for both of these grant types, please write to kristine.jansone@ehc.eu
Events not to miss
- 17-21 April 2023 – EHC World Haemophilia Week celebration – Online
- 21-23 April 2023 – EHC Youth Leadership Workshop – Brussels, Belgium – registrations are now closed!
- 15-18 June 2023 – EHC Leadership Conference, including an ***extraordinary general assembly*** – Brussels, Belgium,
- 6-8 October 2023 – EHC Conference – Zagreb, Croatia (see above for information on the programme and registrations), and
- 3-5 November 2023 – EHC Workshop on New Technologies in Rare Bleeding Disorders, Cascais, Portugal.
Join us to celebrate World Haemophilia Week!
17-21 April 2023 – Online
World Haemophilia Day is fast approaching, and this year we have prepared an exciting programme for a week-long celebration! Please see below the programme:
- Monday, 17 April 2023 – Celebrating World Haemophilia Day – an address from EHC President Declan Noone,
- Tuesday, 18 April 2023 – Focus on access to multidisciplinary care,
- Wednesday, 19 April 2023, 15.00-16.30 hrs CET – Webinar on liver health focusing on gene therapy and post-HCV treatment. This event will feature Declan Noone (EHC President)à, as its moderator, Brian O’Mahony (Ireland), Clive Smith (UK), and Prof Vincenzo La Mura (Italy). This will be an online event with an interpretation of Russian. Registrations are now open and accessible to all!
- Thursday, 20 April 2023 – Peer-to-peer day,
- Friday, 21 April 2023 – Watch the movie trailer of the film “On a Pathway Towards Healthy Ageing” (G. Kapetanovic)
On the pathway towards healthy ageing
Join us for four interactive online workshops in 2023
Following a needs assessment survey in 2022, the EHC will offer online events to mark a healthy pathway towards ageing.
These events will be open to everybody in the community and feature experts in the relevant field, as well as possible to ask questions and discuss!
More detailed information to follow early next year. Meanwhile, save the dates in your calendars:
- Importance of Multidisciplinary Care – 22 February 2023 at 19:00 CET
- Healthy Movement at Every Age – 26 April 2023 at 19:00 CET
- Home Adaptations and Other Tips & Tricks – in the second half of 2023
- Nutrition and Healthy Living – in the second half of 2023
Our first webinar on ‘The importance of Multidisciplinary Care and Coordination‘ (22 February – 19.00 hrs CET) will offer input from a haematologist and multidisciplinary care experts. Participants wishing to join this webinar need to register to receive the dial-in information.
News from our Committees
- ERIN publishes manifesto – Calling out for feedback on unmet needs of people affected by rare bleeding disorders,
- EHC von Willebrand Disease Awareness Campaign,
- VWD Working Group is looking for Ambassadors – Are you interested? Contact the EHC, and
- Video on European Principles of Care for Women and Girls for Bleeding Disorders.
News from our Partners
- Registrations are open for EURORDIS Leadership Training for Patient Representatives.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
