• Mission
  • Activities
  • Member meeting NL
  • Family day
  • Children's website

CMTC OVM Mission

"Our activities are aimed at the well-being of people who suffer from vascular malformations like CMTC ('Van Lohuizen syndrome') and to stimulate the scientific research of these afflictions."

CMTC Efteling 20090613 007

CMTC activities

An example of the many activities which we are performing. With special thanks to Mark Knopfler (Dire Straits) for allowing the use of his music.

Member Meeting NL

Member meeting NL 2015

Our global member meeting was held on the 14th of November 2015 in the Netherlands.
A total of 126 people from 10 countries was present.

Read more

Family day 2015 (Efteling)

On Saturday the 27th of June we organised the Dutch CMTC-OVM family day again! This year we had chosen the Efteling!
It was perfect in all aspects!

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Youth Education Rare Diseases

This is a special website for children in the age around 10-15 years. Here you can travel through a number of worlds together with Amy and Max!


Register as member

We have become members of the International Alliance of Dermatology Patient Organizations (IADPO) which is located in Canada.

The IADPO was founded in 2015 and consists of 3 pillars: research, advocacy and support. IADPO works to empower its over 60 patient association members ─ located in 23 countries representing 25 disease areas ─ to reach more patients, and provide them with greater support, education and advocacy.

The Mission of the IADPO is to improve the life of people with skin disorders worldwide by:

  • Conducting research including primary research with patients.
  • ' Advocating ' for access to new and existing treatments and skin care.
  • Increasing awareness of the number of times skin disorders are existing and the challenges faced by people living with skin conditions.
  • Supporting members, nonprofit organizations, dermatological patients through education, global campaigns, share best practices and network capabilities.

For more information: website IADPO


Upcoming Events

No events found


CMTC-OVM Are you aware how many people with skin diseases are suffering from psychological issues: 20-40%! https://t.co/sxho8icWL6
Thursday, 13 February 2020 14:10
CMTC-OVM @PGOsupport @AAHelder Maken jullie een samenvatting?
Wednesday, 12 February 2020 20:50
CMTC-OVM @robpleticha What about experienced patient advocates? Experience as patient, as parent, as brother/sister? Life experience?
Tuesday, 11 February 2020 15:49