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EHC – European Haemophilia Consortium - Advocating for people with haemophilia and congenital bleeding disorders - /ehc-november-2022-newsletter/
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EHC November 2022 Newsletter

Home > EHC Newsletter > EHC November 2022 Newsletter

Dear Readers,

Another month has passed, and we are delighted to present you with the November issue of our newsletter.

EHC volunteers and staff are currently in Barretstown, Ireland, where the first Summit for the European Rare and Inhibitor Network (ERIN) is taking place! Over 80 participants from across Europe affected by an inhibitor or a ‘rarer’ bleeding disorder (such as single-factor deficiencies – besides FVIII and FIX, and platelet disorders) are gathering for a weekend of scientific lectures, capacity building and networking activities, and we hope, some genuine fun! You can check our social media channels throughout the weekend for more updates.

In November, close to 70 people gathered in Marseille, France, for our Workshop on New Technologies in Haemophilia and Other Rare Bleeding Disorders. Participants could attend two days of exciting talks on novel replacement, non-replacement and gene therapies, as well as issues arising for the organisation of care and financing of these therapies.

Following our General Assembly, held during the EHC 2022 Conference in Copenhagen resulting in the election of a new Vice-President Finance, Ms Manon Degenaar-Dujardin, we have had some changes within our Steering Committee. Here below, we give you more information on newly co-opted members. 

We would also like to remind you that we are looking for volunteers to join three of our committees for a three-year term. Read below to see how you can apply to join the EHC ERIN Committee, the Women and Bleeding Disorders Committee, and the newly formed Non-Severe Committee.

We are delighted to present you with our 2021 Annual Report. We also wish to inform you that the EHC 2022 Conference on Women and Bleeding Disorders proceedings have been published in the Journal of Haemophilia Practice!

Finally, we were shocked and saddened to learn about the passing of Mr Herman De Smet, President of the Belgian National Member Organisation. Please join us in sending our deepest condolences to his close ones and the Belgian rare bleeding disorders community.

We hope you enjoy this newsletter, and please do not hesitate to contact the EHC office for further information.

Warm wishes,

The EHC team

Delegates at the European Rare and Inhibitor Summit 2022 in Barretstown, Ireland
Volunteer with EHC

We are looking for volunteers to join EHC activities for the 2023-2025 mandates

As 2022 is coming to an end, so are the mandates of some of our committees. The EHC is looking for volunteers to join its:

  • European Rare and Inhibitor Network (ERIN),
  • Women and Bleeding Disorders Committee, and
  • Its newly established Non-Severe Bleeding Disorders Committee.

Are you an established member of your national haemophilia and rare bleeding disorders community and are looking to diversify your volunteering activities?

Do you want to support the rare bleeding disorders community and become an advocate for patients across Europe?

Do you wish to bring your strategic views to develop solutions for issues affecting different parts of the community?

Then get in touch with your National Member Organisation (NMO) to be put forward as a volunteer to join one of the following EHC Committees.

EHC NMOs can nominate their candidates until 3 January 2023. For more information on the Terms of Reference of each Committee and how to apply, head to the EHC website.

Changes within the EHC Steering Committee

 

Following the last EHC General Assembly, held in October 2022, several changes occurred within the EHC Steering Committee. EHC Vice-President Finance, Ms Minette Van der Ven’s term ended, and the EHC General Assembly elected Ms Manon Degenaar-Dujardin. Ms Degenaar-Dujardin (Dutch National Member Organisation, NMO) was already a co-opted member of the EHC Steering Committee and the Chair of the EHC von Willebrand Working Group. Ms Degenaar-Dujardin brings to the EHC a wealth of experience from her volunteering work and professional activities, and the EHC is delighted to welcome her in this new role. We also thank Ms Van der Ven for her service to the EHC and for helping the organisation to update its financial management systems.

As the layperson position of Ms Degenaar-Dujardin became vacant, the EHC Steering Committee decided to co-opt Ms Evelyn Grimberg (Dutch NMO) to the Steering Committee for the remainder of Ms Degenaar-Dujardin’s term. Ms Grimberg is also the Chair of the EHC Women and Bleeding Disorders Committee, whose term is ending in December. She is a passionate advocate for women’s issues and access to treatment and care for rarer bleeding disorders. Please join us in welcoming Ms Grimberg to her new role.

Finally, we are saddened to announce that Mr Thomas Sannié (French NMO) is stepping down from his lay position on the EHC Steering Committee due to increased professional commitments. Mr Sannié has been a strong advocate for the involvement of patients in the shared-decision making process and the needs of people with non-severe bleeding disorders. The EHC wishes to warmly thank Mr Sannié for his commitment and dedication to the EHC.

Following Mr Sannié’s departure, the EHC Steering Committee has decided to co-opt Ms Olivia Romero-Lux (French NMO). Ms Romero-Lux is a former Steering Committee member and member of the EHC Youth Committee. She has extensive volunteering experience at national, European and international levels. Please join us in welcoming Ms Romero-Lux back to the EHC.

We are also excited to let you know that there will be some changes in the organisation of the EHC secretariat. Check out our December newsletter for more details.

EHC 2021 Annual Report


Following the approval of its activities and accounts by the EHC General Assembly, the EHC has released its 2021 Annual Report.

Read it now on the EHC website.

Read the proceedings from the EHC 2022 Women and Bleeding Disorders Conference


The proceedings of the 2022 EHC Conference on Women and Bleeding Disorders are now available as open access in the Journal of Haemophilia Practice.

Click on the links below to read the articles:

  • Conference introduction,
  • Monitoring to improve quality of life for women with bleeding disorders,
  • Ageing and women with bleeding disorders,
  • Focus on musculoskeletal health in women and bleeding disorders,
  • The Cinderella Study, women’s lived-in experience with bleeding disorders – a CSL Behring Symposium,
  • Advocacy worldwide for women with bleeding disorders.
Save the date for EHC 2023 events

As we are edging towards the end of the year, we are delighted to announce some of our 2023 event dates. We will inform you as soon as further information becomes available:
  • 25-27 January 2023 – EHC Youth Alumni Event – Amsterdam, the Netherlands,
  • 15-18 June 2023 – EHC Leadership Conference – Brussels, Belgium, and
  • 6-8 October 2023 – EHC Conference – Zagreb, Croatia.

Save the Date: EHC Youth Alumni Event, 25-27 January 2023


We are delighted to announce our second Youth Alumni Event on the 25th – 27th of January 2023 in the Volks Hotel, Amsterdam, The Netherlands.

Since the beginning of the Youth Leadership Workshop in 2014 – it has always been important to the EHC to invest in our interaction, engagement and training with the future leaders in our community. We have reached out to our Youth Leadership Workshop alumni, who have an overwhelming desire for re-engagement. The EHC wishes to explore further training, engagement and reconnecting with the EHC and their peers from other NMOs throughout Europe.

For more information or questions, please do not hesitate to contact Fiona. The opening date for registrations will be shared with our NMOs soon, but in the meantime, you can see a  preliminary programme here.

We can wait to see you soon!

In Memoriam Patrick De Smet

 

With shock and great sadness, we learned of the sudden passing of the President of the Belgian NMO, AHVH, Herman De Smet (1963-2022), earlier in November. Herman was a dedicated member of the Belgian and European haemophilia and bleeding disorders community for many years, and he will be sorely missed. We remember Herman for his kindness, compassion, and dedication towards improving the lives of those with bleeding disorders.

We wish to send our deepest condolences to his family, loved ones, and the Belgian bleeding disorders community for this loss. During his funeral service, attended by Jo Eerens, an EHC Steering Committee member, Herman was remembered for his sense of service and respect towards others, for the tireless work he carried out for the association and at the service of every one of its members.
December 5, 2022 at 2:17 pm EHC EHC Newsletter, Uncategorized 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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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.