CMTC

General Organizational Information

Organization Name:

CMTC

Organization Acronym:

CMTC

Year Established:

1997

Type of organization:

International organization

Mission Statement:

Our mission is to increase the well-being of people who suffer from CMTC and to stimulate and develop activities that could increase this well-being. We also aim to stimulate scientific research regarding the causes and treatment of CMTC.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Cutis Marmorata Telangiectasia Congenita (CMTC)

Organizational Contact Information

Prefix:

Mr.

Title:

PMP

First Name:

Lex

Last Name:

van der Heijden

Address:

Bitterschoten 15

Leusden, 3831PC

Netherlands

See map: Google Maps

Phone:

+1 313 3494 6671

Email:

president@cmtc.nl

Website Address:

http://www.cmtc.nl

Resources and Services Provided

Languages spoken:

English

German

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Health care professionals

Researchers

The public

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Professional counseling

Peer-to-peer counseling

Grief counseling

Medical referrals

Clinical or treatment centers

Genetic testing

Genetic counseling

Genetic information

Referrals for non-medical services

Non-medical services

Advocacy

Speakers

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Slides

Conferences/workshops for:

Affected individuals and/or families