Projects

Overview of our projects

Website young adults

Our current website is mainly intended for adults. We would like young adults in 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.

This project has been partly financed and we are still working on further financing.

Website children

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.

This project is related to another project for which we are currently applying for a grant.

Booklet teachers

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 the school.
Novartis finances this project.

This project is related to another project for which we are currently applying for a grant.

New series of leaflets

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

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.

After the diagnosis website articles

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

Patient advocacy

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 February 2022 because of the link with our conference in the Netherlands in 2021. In 2020 we were able to not organize physical conference because of COVID-19/Corona.

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 2021 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.

Website

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.

Online Community

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

Online community

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.

Result

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).

Result

Project descriptionStartEndBudget (euro)Spent (euro)
General practitioner CMTC brochure202020203.8503.750
Patient journey CMTC2019202000
New website2020202014.50016.665
Patient advocacy2020202234.7003.010
Genetic research CMTC2016202100
New series leaflets202020211.5000
After the diagnosis brochure202020215.0004.008
Website young adults2021202195000
Website children202120219.0000
Online CMTC-OVM Community202020213.5003.700
Booklet teachers202120214.4000

When a project has a green background, this project is completed.

Do you have questions/ideas about projects? Please contact us

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