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

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!

Read more

jezz

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 as a non-profit patient organization can use practically any help!

These:

  1. Membership.
  2. Donor.
  3. Sponsor.
  4. Volunteer.

For more information send an e-mail to This email address is being protected from spambots. You need JavaScript enabled to view it..

We are often looking for enthusiastic volunteers for all kinds of activities. This may include one-time activities but also permanent activities. At the moment we are looking for individuals for the following roles/activities:

  1. A specialist regarding Google Grants (the non-profit version of AdWords) who can helps us to start this up.
  2. Fundraiser. This role is described in a profile description

Experience how beautiful this volunteering is! For more information send an e-mail to This email address is being protected from spambots. You need JavaScript enabled to view it..

We as the CMTC-OVM organization find privacy important!
We see it as our responsibility to protect your privacy. Our privacy policy applies to all services of our organization. You should be aware that CMTC-OVM is not responsible for the privacy practices of other websites and resources which we mention on our website.
Your (address) information will only be used internally and not giving away, sold, or rented to third parties. Your data will not be shared with others without your permission. We have taken appropriate technical and organizational security measures to keep your data safe and protect it from unauthorized use. An example is that we let users create passwords which are difficult to guess even if one uses 'robots'.
All data, including email messages, are stored on secure environments.

Despite all the measures we have taken, we cannot guarantee 100% security and by using our website, you accept this risk.

If you have any questions about our privacy policy please send an email to This email address is being protected from spambots. You need JavaScript enabled to view it.

This website complies with the requirements which the Dutch Government presents to the use of "cookies".
In this context, "cookies" are small files which are placed on your computer to help the website analyze how visitors use the website and to remember certain information if the user comes back. The information generated by the cookie is stored on secure environments. We use this information, for example, especially for statistics so that we can see what has been the effect of a marketing action in terms of the number of visitors on our website.

CMTC Memberships

Privacy

We take privacy serious.  Any registered member (aka user) of our website and community has a specific profile & belongs to certain user goups.  These mechanisms controls what that user is allowed to see, what information the user is requested to supply, AND what he wants to share with others.

Profiles

Any information supplied with a profile for a user is per default only visible to the user. Any user can elect to share information on a per item basis. Not however that "board" has access to all information.

The CMTC community knows several profiles.

  • Members
  • Physicians
  • Volunteers
  • Donors
  • Sponsors
  • Others

The profile determines the information collected for a user. The "richest" profile prevails. Members is kind of a superset which holds also donor information. In onther words, a Member has a Member-Profile but in addition to that he could also be a Donor and Volunteer and be in these groups.

Members

Patients and their families have profiles belong to the ‘family’ of members.  Logically speaking these all “fall” into the same master profile group.

Individual Member

User who is a member and a patient him/herself.

Family member, main

User who is the representative for a family, This user holds the official membership and contact information

Family member, patient

The “Family member patient” is the individual actually diagnosed within a family. As opposed to other members A patient will have the option to supply “diagnostic” and or “diary” information to be attached to his/her profile .
While the patient is not of age the profile should be managed by the “Family member, main”.  When the patient matures he she can participate in the community with her/her own privacy settings.

Family member, other

Partners, Siblings etc. within a Family that wish to participate in the community.

Physicians

Affiliated physicians, those users that have a “professional/medical” relation to our members

Volunteers

Those individuals helping us on a voluntary basis with their time and effort: volunteers

Donor

Those individuals helping us with a monetairy donation 

Sponsors

Individuals or Companies that choose to sponsor us financially or in another material way ( one level up from Donor )

Others

Affiliated organisations and individuals

User Groups

Memberschip of groups indirectly governs the access to information on the website. Which documents, video's, photo's etc are accessible to a user.

A user can belong to multiple groups, For example a member could also be a donor.

User groups are managed in the administrator backend. ( access restricted )

Access

Access, short for Viewing AccesLevels. This is the actual mechanisme of controlling the access to content. A viewing AccessLevel may combine membership of multiple groups into a viewing accesslevel.

Throughout the website any content item article, menu etc has a selction option to set / restrict the access.

  • Public
    Accessible to anybody (logged in or not.. anybody ). Public items are also visible to Registred. In our setup a user CANNOT belong to the public grroup ( see guest)
  • Registred
    Any vistor that has logged in by supplyiong a user-id and password.
  • Guest
    The default "viewing access level" for any vistor to the website before/without logging in. Guests allows information to be hidden from registred users ( for example the invitation to log in)

Viewing access level managed in the adminstrator backendl ( acces restricted )

More Articles ...

  1. Disclaimer

Subcategories

Psychology

Besides the medical challenges, patients also often face psychological challenges! You can also visit his home, at school, at work and on the street. We have already experienced some very compassionate. Dr.. Wouter van der Schaar and Ankie Kerkvliet are those that deal with the psychological side of the whole. We thank Dr. mdet name. Wouter van der Schaar for his contribution to our psychological section.

OVM

Other Vascular Malformations.

jezz

Upcoming Events

Oct
18

1010:1010 18-10-2019 - 1111:1010 23-10-2019

Nov
1

0808:1111 01-11-2019 - 1010:1111 02-11-2019

Nov
9

0505:1111 09-11-2019 - 0505:1111 14-11-2019

Twitter

CMTC-OVM @raredisorders Fully agree! However, this is not only in Canada. This is at least the same average in Europe. We ne… https://t.co/HNBqFI7ro3
About 6 hours ago
CMTC-OVM We have arrived in Washington DC for the NORD conference. In case you want to have a meeting with us, please send… https://t.co/epIO1IM6Fz
About 8 hours ago
CMTC-OVM We provide personal support where we can such as last weekend near San Francisco. @RareDiseases @Eurordis… https://t.co/ASvD9HBNiK
Thursday, 17 October 2019 22:51