How can medical care for people with Thalido­mide damage be improved? The second day of the “Egmond Circle” congress focused on new research, prac­ti­cal support, and expe­ri­ences from vari­ous countries.

When exper­tise is miss­ing in an emergency

A man suffers a stroke – but his symp­toms are not initially recog­nized. Using this case, Prof. h. c. Dr. Stephan Martin, head of the MMK at DIAKOVERE Annas­tift in Hanover, demon­strated the conse­quences that a lack of knowl­edge about Thalido­mide damage can have. He advo­cated for better emer­gency care and inter­na­tional coop­er­a­tion. Surg­eries also need to be care­fully prepared: Which move­ments are indis­pens­able in every­day life? What aids will be needed afterwards?

Special­ized medi­cine and new research

Prof. Dr. Klaus M. Peters, as direc­tor, intro­duced the Multi­dis­ci­pli­nary Medical Compe­tence Center (MMK) at the Dr. Becker Rhein-Sieg-Klinik in Nümbrecht. There, vari­ous special­ties work together to treat conse­quen­tial damage, chronic pain, and age-related illnesses in partic­u­lar. Special­ized care is also being further devel­oped at the Univer­sity Hospi­tal of Cologne.

A major study presented by PD Dr. Carsten Giet­zen from the Univer­sity Hospi­tal of Cologne is inves­ti­gat­ing the state of the heart and blood vessels in people with Thalido­mide damage. Ultra­sound and contrast-agent-free MRI are intended to help better iden­tify health risks. The study runs until 2028; further partic­i­pants are being sought.

Reports from Ireland and Japan

Marie Kehoe‑O’Sullivan provided insights into care in Ireland. There, the National Thalido­mide Advo­cacy Office supports survivors with medical and social issues. Offer­ings include regu­lar check-ups and access to health services regard­less of income. One chal­lenge remains bring­ing special­ized knowl­edge into primary care.

Yukari Masuyama reported from Japan on how diffi­cult it is there to receive contin­u­ous treat­ment tailored to Thalido­mide damage. After a visit to Germany, she founded the “One Team” initia­tive in 2024. Through it, she advo­cates for better access to health­care and the rights of survivors. In Egmond, she called for shar­ing knowl­edge and expe­ri­ences across borders.

What helps in every­day life

How can pain be relieved and falls avoided? The work­shop led by Prof. h. c. Dr. Stephan Martin and his team from Hanover focused on targeted train­ing, indi­vid­ual aids, and vari­ous treat­ment options. A prac­ti­cal tip: Even before a fall occurs, think about and, if possi­ble, prac­tice how to get back up – and how helpers can provide the right support. Further work­shops and focus groups offered space to delve deeper into health and personal questions.

Whether emer­gency care, research projects, or every­day help: The second day of the congress made it clear how valu­able the knowl­edge of the survivors them­selves is. Network­ing this knowl­edge inter­na­tion­ally and making it usable for medical care is one of the central goals of the “Egmond Circle”.