Projects

We recorded a series of video interviews during our global members conference in the Netherlands in October 2023. People with a condition, parents and doctors were interviewed.
These videos will be available in multiple languages (subtitles).

For years, we have been working on uncovering the genetic cause of CMTC. This project has faced significant delays, including the sudden passing of Prof. Dr. Arnold Oranje and the time-consuming process of collecting biopsies (skin samples).

At the European level, primarily led by Prof. Dr. Miikka Vikkula, genetic research into various vascular malformations is ongoing. This research replaces our study.

After our successful first Patient Advocates training project in 2022, we have again received funding to organize a second Patient Advocate training in the Netherlands in October 2023.

Report

Develop and publish a brochure for primary school teachers and a brochure for secondary education in 5 languages (German, English, French, Dutch and Spanish). The aim is to inform the teachers about the daily problems that a child with CMTC/OVM can struggle with (in this context at school) such as that the child is on the side with gymnastics because the child cannot physically participate. In addition, we want to achieve attention and awareness among classmates through the teacher. We want to contribute to improving and strengthening the control and social well-being of these children through school.
Novartis financed this project.

The biggest problem our patients and parents of patients (our target groups) are facing is getting a correct medical diagnosis. In fact, this applies to all rare conditions. Our idea is to deploy Patient Advocates (PAs) in countries where patients with CMTC and Other Vascular Malformations (OVM) live. A PA is an expert by experience, such as a patient or immediate family, who knows the language and culture in a certain country, knows which doctors have knowledge/experience with vascular malformations for, for example, a medical diagnosis, can initiate and maintain contact with our patients and families, knows local health care, disseminates information, uses local social media channels, etc. If there is no local expertise, the PA can contact our organization and expertise centers in the Netherlands, particularly in the field of obtaining a medical diagnosis.
The aim of this project is to have PAs from various countries come to the Netherlands at our expense and to train them with the help of a workshop in the Netherlands. This workshop is just before our worldwide conference in the Netherlands.

We have received a subsidy from the Dutch government for this project and started in July 2020. Due to the COVID-19/Corona, the end date has been moved to December 2022 because of the link with our conference in the Netherlands in 2021. In 2020 we were able to not organize a physical conference because of COVID-19/Corona.

Report PA training 2022

Our current website is mainly intended for adults. We would like young adults of the age of approx. 15 – 30 years can find comprehensible information about vascular malformations in their comprehensible language and style.

Young adult members from, among others, Canada, Denmark, England, and Poland contribute to the definition of this website.

We have a series of leaflets in several languages and will update and expand this series with even more diseases, such as Klippel-Trenaunay and DCMO.

Current series of leaflets

In collaboration with the worldwide organization for people with giant moles (Naevus Global), we are developing three brochures in 6 languages (German, English, French, Italian, Dutch and Spanish) for parents of children with a rare condition for 3 different phases of education ( pre-school, primary and secondary education).

This project is sponsored by European Reference Network Skin.

In about 9 weeks we developed our new website in collaboration with around 30 people in different countries. Our new website was launched on May 26, 2020.

A website is never ‘finished’ and we are still busy adding new content and functionality.

Our own and secure CMTC-OVM online Community is available!

Online community

In collaboration with the Association of Collaborating Parent and Patient Organizations, the Dutch General Practitioners Association (NHG) and Prof. Dr. Suzanne Pasmans developed a brochure for general practitioners regarding CMTC. This brochure has been developed in German, English, French, Dutch and Spanish in line with our corporate identity. Funding for this project has been arranged by Novartis.

Result

As organization, we pay a lot of attention not only from a medical perspective to our patients, but also to the psychological and psychosocial aspects of living with a rare disease.

Our website contains a large series of articles on the psychological and psychosocial aspects of which ‘after the diagnosis’ is not only available via the website as a series of articles but also as a separate booklet in different languages.

After the diagnosis website articles

The brochure ‘after the diagnosis’ (after finishing the project)

A patient journey is intended to map (and visualize) the journey of a patient with CMTC throughout the life of this patient and his/her family. The European organization for rare disorders Eurordis has developed a template for this which we use as a basis and expand it further. We do not only look at the patient but also at the family (holistically).

Result