Overview of our projects
Our current website is mainly intended for adults. We would like children aged 8-12 years to be able to find understandable information about vascular malformations in understandable language for them.
Several children have already given a presentation or made a paper about the disease they have themselves or a brother/sister. They would like to provide their information about this.
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 in 2024.
The financing is largely done from our own financial resources.
Genetic research CMTC
For years we have been working on the genetic cause of CMTC. This project has been seriously delayed due to, among other things, the sudden death of Prof. Dr. Arnold Oranje and the collection of biopsies (pieces of skin) that takes a lot of time.
In 2022 we hope to have the results of this research presented by Prof. Dr. Miikka Vikkula during our member’s conference in the Netherlands. A major problem is finding enough patients with classic CMTC to take a biopsy.
Patient Advocates training – the next step
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.
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.
Website young adults
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.
New series disease specific folders
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.
Parents support guide
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!
General practitioners CMTC brochure
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.
After the diagnosis brochure
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.
Patient journey CMTC
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).
|General practitioner CMTC brochure
|Patient journey CMTC
|Genetic research CMTC
|New series folders
|After the diagnosis brochure
|Website young adults
|to be determined
|Online CMTC-OVM Community
|Parents support guide
|Patient Advocates training – the next step
When a project has a green background, this project is completed.
*1 = The amount will increase due to additional printed materials.
*2= Naevus Global and CMTC-OVM invested in additional hard copies.
Do you have questions/ideas about projects? Please contact us