ECHDO is entering a new chapter. At our General Assembly in Croatia earlier this year, we elected a new Board — with Karen Tomlin (UK) as our new President.
Karen is a mother to a 16-year-old son born with critical aortic stenosis. While she once wore the hat of a nurse, it was only after becoming a medical parent herself that she fully experienced the other side of the healthcare system. “The early days of diagnosis were very lonely and scary. I made it my mission to make sure others weren’t left in the same situation.”
She joined ECHDO a few years ago, bringing with her years of advocacy through the Children’s Heart Federation in the UK. There, she worked to raise awareness, support families directly, and influence policy decisions. Now, as President of ECHDO, she has a clear vision: “I would like to see ECHDO take a more active role in patient advocacy across Europe. There is power in collective voices, and we must ensure the needs of people with CHD are heard loudly.”
About ECHDO
Founded in 2006, formally established in 2010, the European Congenital Heart Disease Organisation (ECHDO) is a non-governmental umbrella organisation representing CHD patients of all ages, as well as their parents and families. Today, ECHDO brings together almost 30 member organisations from across Europe to:
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share information, knowledge, and experience,
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improve access to the best possible care and treatment,
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strengthen support networks between countries,
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and highlight both challenges and best practices.
Meet the New Board
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President: Karen Tomlin (UK)
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Vice President: Mirela Dežman (Croatia)
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Treasurer: Michelle Woods (UK)
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Secretary: Katarina Stano (Slovakia) - Also heading up Advocacy
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Board Members: Xenia Patsalidou (Cyprus), Tsvetoslav Naydenov (Bulgaria)
As ECHDO grows in strength and reach, we warmly invite CHD organisations from countries not yet represented to join us. Together, we can ensure that every child and adult with CHD in Europe receives the care, support, and recognition they deserve.
