Member conference NL 2021

The year 2021 is again a special year, especially because of the worldwide COVID-19 pandemic. Normally we organize our annual worldwide members conference in a conference center in the Netherlands. This year we chose not to cancel our conference but to organize it ‘online’. It was a bigger success than we expected! Members who would otherwise never be able to attend due to travel time/costs could now participate.

Over 30 people attended our conference. Participants came from Belgium, Canada, England, Georgia, Kenya, the Netherlands, Austria, Poland and the USA. The biggest challenge was to find a time slot so that practically everyone from all over the world could participate.

Lex opened the conference as president of the CMTC-OVM organisation. Following an online survey, the minutes of the previous Members’ Conference were approved. Subsequently, the financial data and the positive findings of the Audit Committee were presented, after which those present discharged the board for the 2020 financial year.
The minimum membership contribution for the year 2021 is the same as in 2020 and 35 euros.

The budget for the year 2022 was presented, it should be noted that we have submitted a subsidy application for this to the Ministry of Health, Welfare and Sport (VWS), which is still being processed.

The following points were discussed:

1. The Complaints Committee has not received any complaints.
2. The CMTC-OVM organisation: we would like to expand the board with two new functions, namely: ‘youth representative’ and ‘patient advocate coordinator’. We are still looking for candidates for this role.
3. Overview of the main activities carried out in 2020. An impressive list!
4. Planned activities for 2022 where we assume that the pandemic will decrease significantly so those ( international ) meetings can be organized again.
5. Budget 2022.
6. Our planned, in progress and completed projects. Important is our worldwide Patient Advocates project: Patient Advocates from all over the world come to the Netherlands at our expense for training and to attend our global conference at the end of October 2022.
7. Personal stories. These are widely read. It would be nice if more people would share their personal stories.

The full presentation and videos are available to members and can be viewed at the bottom of this page.

Over the past 25-30 years, knowledge about the cause of vascular malformations has increased enormously. Eleven genes have been found in which mutations occur that are responsible for the development of a malformation. Inhibitors have also been found that have a beneficial effect on the cause of many of these conditions. In his lecture, Miikka Vikkula* will give an overview of the knowledge that has been gained through genetic and clinical research and how far we have come.

Full report

Treatment of vascular malformations

Professor Laurence Boon is a plastic surgeon specialising in multidisciplinary treatment of vascular malformations at the Cliniques Universitaires Saint-Luc (UCL) in Brussels.
In this webinar, Boon discusses the treatment of vascular malformations. She shows various examples (photos) of treatment, giving you a good idea of what is possible.

Vascular malformations can occur anywhere on the body and in any tissue. In the skin, subcutaneous tissue, organs, bones and brain, which is why an interdisciplinary approach is essential. The various specialisations in the field of surgery are also important.

In a multidisciplinary vascular malformation centre, various disciplines work together to discuss patients in order to arrive at the correct diagnosis and treatment.

Boon describes the various vascular malformations and the most appropriate treatment (laser, surgery, sclerotherapy, embolisation). Photos of before and after treatment, give a good impression of the effect of the treatment.

Thanks to the increase in knowledge about the genetic background of malformations, they can be diagnosed in a better way and more precise treatment is possible. This includes the drug sirolimus and similar inhibitors. Sirolimus appears to work well in several clinical trials. Boon shows some impressive results.

Managing your child’s health

Margaret Lee is a pediatric dermatologist and assistant professor of dermatology and pediatrics at Boston University (USA). She herself has a mild version of DCMO and is, therefore, an expert. In addition, she is a professional coach. She helps people with the psychological and emotional aspects of vascular malformation diseases. She is the founder of ‘Comfortable in our skin’ a non-profit organisation that helps people accept themselves and others as they are. It is not just for people with skin conditions but for anyone who is different from others in some way.

In this webinar, she discusses the case of a baby with a capillary malformation (CM). Using this example, we learn about the important aspects of a diagnosis. What is the prognosis? What are non-important aspects for the diagnosis, because some aspects (2-3 syndactyly for example) occur in multiple malformations. What does the baby in the example have? There are several possibilities (PWS(Port Wine Stain or CMTC or DCMO). How difficult the diagnosis often can be is evident from this example. The parents of the baby were confronted with different diagnoses by several doctors.

What are important questions for parents of a child with a vascular malformation?

What are the distinguishing features of the following vascular malformations: PWS (CM), DCMO, CMTC, PROS and the options for treatment. What should you keep an eye on and how often should you see the doctor?

How does your child deal with the condition psychosocially or has sufficient resilience can be a problem. She gives a final advice as a doctor but also as a patient herself. “Seek contact with one to three expert doctors. Accept the diagnosis, don’t wonder too much why this has to happen to your child.”