Around 50 people participated in our conference (a limited number joined online, including from Canada and the UK). Participants came from Belgium, Germany, England, the Netherlands, Austria, Poland, and Slovakia. Quite a few members turned out to be on vacation, which meant we had fewer attendees. We plan to handle this differently in 2025.
This year, we again organized a multi-day members’ conference. The first guests arrived on Friday afternoon. We had a shared dinner, and afterwards, everyone had the opportunity to continue talking and connecting in the lounge. On Saturday, we started at 9 a.m., and the program ended around 5 p.m. Of course, we had arranged for stroopwafels again. Dinner was at 6:30 p.m.
This year, we were fortunate to be in a position to cover hotel rooms for each family/participant, making it as easy as possible for everyone to stay the whole weekend and attend the Saturday evening. The Sunday morning program was designed, among other things, to exchange ideas and conduct an initial evaluation.
Several members signed up to help us with our activities.
Members meeting and other discussed items
As chair of the CMTC-OVM organization, Lex opened the conference. This year, we split the ‘formal’ part into a brief introduction and the organizational accountability section.
The introduction included a welcome, an overview of the weekend program, and a presentation by our Eden from the UK, who shared her project.
At the end of the afternoon, the organizational section took place. The minutes of the previous members’ conference were approved. Subsequently, the financial figures and the positive findings of the Audit Committee were presented, after which the attendees granted discharge to the board treasurer for the 2023 financial year.
The minimum membership contribution for the year 2025 remains the same as in 2024, namely €35.
The budget for 2025 was presented, with the remark that we have submitted a grant application to the Ministry of Health, Welfare and Sport (VWS). The maximum institutional grant now amounts to €78,150! This gives us the opportunity to organize many activities again, including three events in 2025!
The following items were discussed:
- The Complaints Committee did not receive any complaints.
- Overview of the main activities carried out in 2023 — an impressive list!
- Planned activities for 2025 — thanks to the additional grant, this will include even more activities!
- 2025 Budget.
- Our planned, ongoing, and completed projects.
- Video interviews. These have already been viewed thousands of times. During our 2023 members’ conference, we recorded a series of video interviews which are now available on our website with subtitles in multiple languages. We interviewed patients, parents, and doctors. During our 2024 members’ conference, we recorded another series of video interviews.
Presentations Lex van der Heijden
Presentation by Dr. Paolo Gasparella (Austria) – chirurgy of vascular malformations
Overview
Dr. Paolo Gasparella, specialist in pediatric and adolescent surgery, presented the role of pediatric surgeons in the treatment of vascular anomalies. These anomalies are congenital conditions characterized by different histological types, locations, and clinical presentations. The goal of surgical treatment is to alleviate symptoms, improve functionality, and address aesthetic concerns in order to reduce the psychosocial impact.
Types of Surgical Interventions
Curative Surgery:
This type of surgery aims to completely remove the vascular anomaly in localized cases. It is the preferred option when it can provide both functional and aesthetic healing without damaging surrounding tissues. Challenges include anatomical limitations and the infiltrative behavior of the anomaly.Surgical Biopsy:
A biopsy is performed to confirm the diagnosis and rule out malignant conditions. Biopsies are increasingly used to obtain genetic information for accurate characterization of the anomaly.Debulking Surgery:
The goal of debulking is to reduce the volume of the anomaly, which helps relieve symptoms such as localized pain and improves functionality.Associated Procedures:
Additional surgical interventions, such as tracheostomy or gastrostomy, support the specific needs of the patient.
Multidisciplinary Approach
Dr. Gasparella emphasized the importance of a multidisciplinary treatment strategy. This collaboration is essential to achieve the best outcomes for the patient by carefully weighing the various treatment options.
Prenatal Diagnosis and Planning
Prenatal evaluation by pediatric surgeons involves assessing the viability of the fetus and developing plans for both perinatal and long-term treatment strategies, while also providing support and guidance to the family.
Conclusions and Considerations
Surgery is a viable option for selected cases, with the decision-making process following a patient-centered, multidisciplinary approach. Dr. Gasparella emphasized the role of patient organizations in advocating for high-quality care and the importance of joint efforts in the treatment of rare diseases.
Presentation by Dr. Carine van der Vleuten (NL) – KTS & other vascular malformations … about genetics and semantics
Vascular anomaly syndromes with eponyms such as Sturge-Weber syndrome and Klippel-Trenaunay syndrome, were described approximately 100 years ago. At that time, diagnoses were
primarily based on clinical observations, as imaging studies were limited and knowledge of genetics was not as advanced as it is today. Relying solely on clinical examination made achieving an accurate diagnosis challenging then and continues to pose difficulties today.
Currently, many vascular anomaly syndromes can be characterized genetically, with genetics as the most important clue to come to a diagnosis. Despite this advancement, eponyms continue to be used. Increasingly, these eponyms are associated with genetic diagnoses, offering a new perspective on the naming and genetic classification of disorders. This evolution brings the possibility of targeted therapeutic options, suggesting that completely ‘saying goodbye’ to well-known and frequently used eponyms might not be desirable yet.
Workshop by Dr. Marije van Dalen – Dealing with (in)visible conditions (NL)
The presentation “Living with a (In)visible Condition” consisted of two parts.
In the first, informative part, we discussed what is currently known about living with a medical condition. Approximately one-third of individuals experience psychological challenges. From Erasmus MC, several digital tools have been developed to support young people, such as Face IT for youth (YP Face IT), the Grow It! app, and a new tool currently in development as part of the My Digital Friend project.
The second part consisted of an interactive workshop. We began by discussing different ways you can inform others about your (in)visible condition (see also the attachment). After that, participants worked on creating a scene in which someone made a comment or asked a question about the condition. Following the creation of these scenes, we reflected together on how we responded and what emotions these interactions evoked.
Workshop by Johannes Verheijden – Living loss (NL)
Johannes delivered the workshop in both Dutch and English.
The presentation addressed the concept of “living loss”, a form of grief that cannot be fully resolved and tends to reappear periodically in the lives of people with chronic health conditions, their caregivers, and bereaved loved ones. This type of loss can manifest in various ways:
- Anticipatory grief: grief for something that is expected but has not yet occurred.
- Chronic grief: grief that cannot be processed or resolved.
- Inhibited grief: suppressing grief in order to protect others.
- Disenfranchised grief: grief that is not acknowledged or validated by others.
- Delayed grief: grief that resurfaces more intensely at a later time.
In addition to the emotional burden of grief, the presentation also highlighted positive feelings such as joy, pride, and gratitude, as well as personal growth and resilience that can arise despite ongoing challenges.
Coping Styles and Self-Care:
The presentation explored various coping styles for managing living loss, including both problem-focused and emotion-focused strategies. Caregivers were encouraged to seek support, set boundaries, and create space for both positive and painful emotions.
Value Orientation and Self-Reflection:
Reflecting on one’s own upbringing—and how it influences the caregiving role—plays a key role in this context. The importance of maintaining a balance between closeness and distance in caregiving was emphasized, as well as cherishing core values such as recognition, appreciation, and unconditional love.
In short, the presentation provided insight into the complex and ongoing experience of loss in the context of long-term care, while offering practical tools for coping and finding meaning and resilience in everyday life.
Johannes is also the author of the booklet “Levend Verlies” (Living Loss), which we developed in collaboration with Nevus Netwerk Nederland.
Eden Quine-Taylor
Our first contact with Eden dates back to 2005, when she was just five years old. Her parents reached out to us, seeking clarity about the condition Eden might have. We were able to arrange for them to fly on a private plane to Maastricht, where Prof. Dr. Maurice van Steensel provided them with medical support. That same year, they attended our international members’ conference for the first time.
Since then, Eden has grown into a film producer. As part of her graduation project, she launched a film initiative called Paper Tiger. During our members’ conference, she presented and explained this project.
Panel
This year was the first time we organized a panel featuring both medical professionals and individuals with lived experience.
From left to right: Dr. Paolo Gasparella, Eden Quine-Taylor, Dr. Marije van Dalen, and Johannes Verheijden.
They answered a variety of questions from the audience — and also posed questions to the audience themselves.
Below is the video of the panel.
Musical Performance Elwin & Nienke Lentze
At 8:00 PM, we introduced something new to our program: a moving musical performance by Elwin Lentze and his wife Nienke. Through music (piano, guitar, and vocals) and visuals, they shared their deeply personal journey with their daughter. The performance was powerful and emotional.
Living Loss – A Story of Life with a Very Rare Condition
When we, Elwin and Nienke, were preparing for the arrival of our daughter, nothing could have prepared us for the turn our lives would take. The pregnancy went smoothly, and we looked forward to a beautiful future as a family. But that dream was abruptly disrupted when our daughter, not even a day old, suddenly stopped breathing. The doctors were in a panic, searching for answers that, at that moment, didn’t seem to exist. We spent the night in fear and uncertainty, until we finally heard that she was still alive. The diagnosis, which only came after a long and difficult process, was a rare condition: Alternating Hemiplegia of Childhood (AHC).
This diagnosis brought us into a world where limitations became the new normal. Daily life, which seems so routine for others, became a continuous struggle for our family. Outings, vacations, even a simple car ride now required extensive planning. Our relationship was also tested, as the care for our child often pushed us to our limits.
Yet, this journey also brought unexpected positives. Our perspective on life changed, and we learned to cherish moments of connection and support. We met people who were willing to help and think with us. Together with other parents of children with the same condition, we work toward solutions and share hope. The connection with fellow families has given us strength and has shown us that we are not alone.
Our journey with AHC is a story of living loss — but also of rediscovery and growth. It is a story of cherishing small victories, learning from each day, and finding strength in love and community.
It was very special to be able to share this story during the CMTC-OVM international member conference in Leusden. For me (Elwin), as a musician, it was even more meaningful to support the story with fitting songs and perform them live. Of course, I couldn’t leave out my personal song “One in a Million”, which speaks of our worries and fears, but above all, the love I have for my daughter.
The response from the audience was warm and emotional. Thank you so much!
Link to song ‘one in a million’
Entertainment
In addition to the usual creative workshop, we also invited “MadScience” again this year. MadScience conducts all kinds of physics and chemistry experiments. The children were incredibly enthusiastic and had a blast (as did the parents who were present)!
The creative workshop once again resulted in many special creations this year. Several children went home with bags full of creativity.
Massage
The chair massage was a success again this year!
Both adults and children (even entire families) took advantage of this free chair massage. Our masseur was busy all day, except for one time slot.
Interviews
On our website, we feature not only personal stories in text but also a blog aimed at sharing personal experiences. Video interviews are now a great way to share personal experiences in multiple languages.
We have recorded interviews with people with vascular disease, both adults and children, parents of a child with vascular disease, and healthcare professionals. These interviews are recorded in the interviewee’s native language and will be published on our website in multiple languages with subtitles.
Minutes (members only)
Reactions participants
It was wonderful and special to meet so many like-minded people and share experiences. So much recognition!
It was good to be updated on developments regarding CMTC-OVM. We also received a lot of written information. Connecting with others in the same situation was very helpful; it was nice to be able to share our story.
We thoroughly enjoyed this year’s members’ day. Not only did we have a great time catching up with other families affected by CMTC, but the young patients also had lots of fun together and “felt they weren’t alone.” The program was very interesting and entertaining for everyone—with speakers and a singer for the adults, and crafts and experiments for the children—and everyone’s well-being was perfectly taken into account. A big thank you to the organizers!!
Every encounter with CMTC-OVM members touches my heart; it feels good to be part of a big family.
It was our first time attending a members’ conference. It was exciting, and we didn’t really know what to expect. It was already promising from the start. We were only recently members of the association, and we found the communication and introductions beforehand very enriching.
You are very approachable: we always received an immediate response to any question or email, and the video call with Lex to get acquainted was also very valuable.
On Friday evening when we arrived, we were immediately warmly welcomed and welcomed as if we were part of a large family. We felt like fellow sufferers.
After years of searching, we no longer felt alone with our son’s vascular problems.
We returned home with a wealth of experiences, information, and support, and we look back on this weekend fondly. We hope to be there again next year.We are incredibly grateful that we were able to participate in the members’ day in Leusden again this year. It means so much to the children that they can see each other. After this weekend, they are full of courage and feel less alone with their spots. As parents, we always learn something new about the condition and can exchange ideas and network. These gatherings are incredibly important for the whole family, and we are grateful and proud to be a part of them.
