For patients and families with CMTC and Other Vascular (bloodvessel) Malformations

CMTC-OVM is a worldwide non-profit patient organization that aims to improve the quality of life of people suffering from vascular abnormalities (blood vessel abnormalities), such as CMTC (‘Van Lohuizen syndrome’), and stimulate scientific research into these disorders.

Upcoming events

May 2021
July 2021
October 2021
No event found!

12 years ago (2006) our son was born. Very quickly.

12 YEARS AGO OUR SON WAS BORN

Your support is powerful

Our worldwide non-profit organization, active since 1997, consists entirely of motivated volunteers. We can always use support in many areas. Options are for instance as sponsor (by means of eg. products, services and money) but also as volunteer, member and donor.

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REGISTER AS MEMBER

Membership of our organization offers a lot! Think for example of full access to our website, our international Family Days and Conferences in the Netherlands! Contact with other patients, families and health care providers is crucial!

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CONTRIBUTE WITH A DONATION

Do you want to make a concrete contribution to improving the quality of life for people with a rare disease?

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SPONSOR OUR ACTIVITIES

Becoming a sponsor of our organization also increases the (global) visibility of your company and shows your social face. Becoming a sponsor is a concrete interpretation of Corporate Social Responsibility / Involvement. We have sponsors from different companies who make an important contribution in various ways.

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BECOME VOLUNTEER

Voluntary work in our organization contributes to your personal development. We often offer challenging work in an international and dynamic environment. As a volunteer, you can get a good expense allowance. We have drawn up volunteer profiles for practically all roles.

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On this #PatientsRightDay, let's make sure that all people living with a rare disease have access to:

⌚️Timely diagnosis
✅High-quality essential health care
💊Safe, effective and affordable medicines and treatment

How can we achieve this? 👉 http://l.eurordis.org/PFS

The next 𝐕𝐀𝐒𝐂𝐄𝐑𝐍 #𝐰𝐞𝐛𝐢𝐧𝐚𝐫: #𝐂𝐥𝐚𝐬𝐬𝐢𝐟𝐢𝐜𝐚𝐭𝐢𝐨𝐧 𝐨𝐟 #𝐕𝐚𝐬𝐜𝐮𝐥𝐚𝐫 𝐀𝐧𝐨𝐦𝐚𝐥𝐢𝐞𝐬 will take place on Wednesday April 28th from 5-6pm CET

📝Registration now open here: https://forms.gle/EBCiNQjWFGwkvAa86…

@pgasparella
#ERNeu #Vascularanomalies #RareDisease

The new scientific paper published in the @eshgsociety (European Journal of Human Genetics), has confirmed that the number of people worldwide living with a rare disease is estimated at 300 million.
🔗 https://bit.ly/3tQdZee

@rarediseaseday

#RareDiseaseDay2021 https://twitter.com/rarediseaseday/status/1374766439261962241

Rare Disease Day@rarediseaseday

Help us complete the phrase! 🖐️🟣🔵🟢

How many people live with a rare disease around the world?

Leave your answer below 👇👇👇

#RareDiseaseDay

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