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February – March 2023 Newsletter

Home > EHC Newsletter > February – March 2023 Newsletter

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

A farewell to Amanda Bok
EHC’s former CEO, Amanda Bok, leaves the organisation after a ten-year mandate. In this short article, we wish to acknowledge her work and accomplishments and thank her for her contribution.

Read the article

EHC welcomes Shinoh Lee as its Team Manager
 

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!

Read the article

Join us in Zagreb on 6-8 October!
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. 

 

Read the EHC Health Policy Review 
The most recent version of the EHC Public Policy Review, which covers updates on health policy and legislative developments in 2022, is now available on our website.



Consult the document here.

EHC Think Tank publishes report on its workstreams
 

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.

You can read the full article for free here. 

EHC Think Tank publishes report on its workstreams
 

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.

You can read the full article for free here. 

Open the door to a new reality
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!

Reminder – Apply for an activity or physical activity grants
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

For more information, please visit the EHC website. 

 

Events not to miss

Save the date for EHC 2023 events
Please Save the Date for the EHC 2023 events as shown below. Further details on each event will be communicated via this newsletter and via direct mailing to concerned parties at a closer date to the event.
  • 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.
***The EHC extraordinary general assembly will take place on Friday, 16 June, in Brussels, Belgium. More information on the meeting and instructions for registrations will be shared via direct mailing to EHC members in March.*** 

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)
More information will be available on our website and social media in the coming weeks. In the meantime, should you have any questions, do not hesitate to contact Daria Mironova. 

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.

The event registration can be completed here.

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.
March 31, 2023 at 1:50 pm EHC EHC Newsletter Share via:

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EHC Mission

The European Haemophilia Consortium (EHC) is a non-profit, non-government organisation that works to improve the quality of life for people with congenital bleeding disorders such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders in Europe.

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Phone: tel.: +32 2 343 41 26
E-mail: office[at]ehc.eu
Website: ehc.eu

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Miguel Crato
Jim O’Leary

Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.

He was born in Ireland, educated and worked there until 1984 when he relocated to the UK. Jim continued his career in the UK until he retired in 2015 and returned to live in Ireland.

Jim has been married to Monica since 1983 and they have two sons and three grandchildren.

Jim’s career was in Finance, and he worked for 20 years as European financial Controller for a US multinational involved in liquid and gas analysis techniques. Before he retired in 2015, he managed a Chartered Accountancy practice with 2 offices and 70 employees.

In 2016 Jim joined the board of the Irish Haemophilia Society, trying to give something back for all the support they have offered for so many years. For 6 years Jim as involved in the Inhibitor Working Group of the EHC and has been rewarded by seeing the platform the group built and the community that was created!

He is now very happy total up the role of the advisor to the newly formed ERIN committee which will use the existing platform to hopefully build an inclusive community for all rare bleeding disorders while continuing the unfinished work for the inhibitor community, especially Haemophilia B inhibitors. He also wants to advocate for better planning and support for persons ageing with a bleeding disorder. This is a new situation thanks to better treatments, but the community is not yet ready to deal with it.

 

Nathan O’Hagan Doyle
Dr Maria-Elisa Mancuso

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.

Maja Søndergaard Knudsen

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.

Besides the ERIN work, I am a medical doctor currently working on a Ph.D. thesis in the field of multidrug resistant organisms and the faecal microbiome

Ildiko Kaslik

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.

When not being with my family or working in front of three way too big monitors, you’ll find me sipping a good cup of coffee (ok, or four), reading books mainly in the field of mental health or working out.

 

Amy Owen-Wyard

 

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.

Amy’s two-year old son Logan was diagnosed with Glanzmann Thrombasthenia at 7 weeks old and since diagnosis Amy has become a passionate advocate for rare bleeding disorders. After Amy and her partner attended a Newly Diagnosed Weekend in Manchester, UK, she decided to stand for election as a trustee for the UK Haemophilia Society and joined the Board in November 2021.

As a parent of a child with GT Amy brings new outlook to the UK board, previously dominated by those with lived experience of haemophilia. She is passionate about supporting not just her son but the wider rare bleeding disorder community. As a mental health professional working in the National Health Service Amy also understands the workings of the healthcare sector and the huge importance of psychological support.

Working beyond the UK to support the rare disorders community Amy is on the steering committee for Haemnet’s Glanzmann’s 360 study.

 

Christina Burgess
PARTNERS Project Consultant
Declan
Community Programmes Officer
Fiona joined EHC in 2017 and is currently one of the Community Programmes Officers, with her work focusing on youth related activities including training and workshops and the Youth Fellowship Programme. Fiona previously worked for the Irish Haemophilia Society for eight years. Fiona has a degree and Masters in Psychology from Trinity College Dublin and is currently completing her PhD in Psychotraumatology.
saskiaSaskia Pfeyffer joined the EHC in 2016 as the Office Assistant and deals with administrative and accounting tasks as well as supporting the smooth running of the office and its activities.

Prior to this, Saskia has worked for more than ten years in the field of women’s health and rights. She worked for the European Parliamentary Forum on Population and Development (EPF) and for Care international.

Saskia is Dutch and speaks English, French and Dutch and has a bachelor degree in European studies from the University of The Hague, the Netherlands.
Communications Officer
Charles brings a wealth of experience from various agencies and organisations such as the University of Washington, the United Nations, the Dutch government/EU, Georgetown University and the US State Department - international assignments in the Netherlands, Bulgaria, the Czech Republic, Norway, Greece, Greenland, Denmark, Japan, Macedonia, the Republic of Georgia and Bosnia and Herzegovina; Masters, Project Management Certification. Charles speaks several languages including English (mother tongue), Norwegian, some Klingon and broken Elvish.
Jana Žitňanská
Ms. Jana Žitňanská is a Member of the European Parliament (MEP) and part of the European Conservatives and Reformists Group (ECR). She is the Vice-Chair of the Committee on Women’s Rights and Gender Equality and a Member of the Committee on Employment and Social Affairs. Her political career started in 2010 as a Member of the National Council of the Slovak Republic and was followed by being a Non-Attached Member of the National Council from 2012 until 2014. Ms. Žitňanská is a trained journalist and has a longstanding experience as an editor and news presenter in TV and radio before being the Head of Foreign News of TV Markiza from 2007 until 2009.

In the European Parliament, Ms. Žitňanská is the rapporteur for the European Parliament Own-Initiative report on Pathways for the reintegration of workers recovering from injury and illness into quality employment and shadow-rapporteur on the proposal for a Directive on the Work-Life Balance for Parents and Carers. She joined the European Parliament Rare Bleeding Disorders Group in 2018.
Paul Rübig
Paul Rübig is an Austrian politician and Member of the European Parliament (MEP) from Austria. He is a member of the Austrian People's Party, part of the European People's Party.

In 1991, Rübig was selected as a candidate for the Austrian People's Party for the regional elections in Upper Austria. After having been elected, he instantly became Chairman of the then so-called EU Integration Committee. By facilitating the accession of Austria to the European Union in this period, he quickly gained significant expertise in EU related matters.

After a very short period as MP, he became a Member of the European Parliament in 1996, at this time by decision of the Austrian Parliament. Since then, he has been re-elected four times, namely in 1996, 1999, 2004 and 2009.
Norica Nicolai

Norica Nicolai is the vice-chair of the ALDE Group in the European Parliament and one of the strongest liberal voices in Romania. She has been a member of the European Parliament since 2009 and has been active in, among else, the Foreign Affairs Committee, the Committee for Security and Defense, Women’s Rights and Gender Equality Committee.

In addition, at the start of her second mandate in 2014, she became a member of the Fisheries Committee in the European Parliament. She also decided to use her notoriety and energy to get involved in social causes, such as access to treatment and information for people with rare diseases. She became a promoter of more campaigns regarding the problems of infertility among European citizens and has been lobbying for their rights.

Mrs Nicolai started her political career as deputy-minister in the Ministry of Labour in Romania back in 1995 and she was in charge of, among other things, the domain of gender equality. In addition, from this position, she actively implemented the acquis communautaire in Romania, creating and implementing many laws regarding issues of women’s rights.

She was also a member of the Romanian Senate from 2000 to 2008, where she was part of the Judicial Committee and the Defense Committee, and held the position of Vice-president of the Senate for the duration of one year.
Lastly, Mrs. Nicolai holds a degree from the School of Law of the University in Bucharest.
Dr. Miroslav Mikolášik
Dr Miroslav Mikolášik has been a Member of the European Parliament since 2004. He is Member of the Committee on the Environment, Public Health and Food Safety.

Dr Mikolášik is a very strong supporter of the European Haemophilia Consortium, participating in several EHC Round Tables in the past (e.g. Round Table on Rare Bleeding Disorders and Orphan Drugs, 2014; World Haemophilia Day, 2016).

Dr. Mikolášik’s work in the European Parliament revolves around access to life-saving medicines in Europe and paediatric medicines.
Nessa Childers
Nessa Childers was elected to represent the Blackrock area on Dún Laoghaire / Rathdown County Council as a Green party councilor in 2004. During that time, she served as part of the Dublin Regional Authority. She resigned her council seat in August 2008 and joined the Labour Party.

In the following year, she was elected as a Member of the European Parliament for the Ireland East Constituency. She resigned from the party in 2013. In 2014 Nessa Childers was re-elected as an independent MEP and joined the Group of the Progressive Alliance of Socialists and Democrats as a non-party member.
Dr. Cristian-Silviu Bușoi
Dr. Cristian-Silviu Bușoi is a Romanian physician and Member of the European Parliament, part of the European People’s Party. He is also currently a member of the Committee on Environment, Public Health & Food Safety Committee (ENVI).

Highly involved in health care topics, Dr. Buşoi has been a strong supporter of the European Haemophilia Consortium (EHC), co-chairing various EHC Round Tables. He is also the co-chair of the informal interest group in the European Parliament on Patient Access to Healthcare and the Friends of the Liver Group.
Heinz K. Becker, MEP
Heinz K. Becker has been a member of the European Parliament since 2011 in representation of the Austrian party Österreichische Volkspartei. He is member of the Civil liberties, justice and home affairs Committee, the “Petitions” committee, as well as vice member of the “Employment and social affairs” committee.

MEP Becker is also co-chair of the Parliamentary 'Intergroup on Ageing and Intergenerational Solidarity' and Vice President of the Parliamentary 'Interest Group on Carers.' He is Vice President of the European Seniors’ Union (ESU), member of the disability intergroup of the European Parliament and member of the European Alzheimer's Alliance.

Before becoming an MEP, Heinz K. Becker worked for various international advertising agencies.