International Myotonic Dystrophy Organization

General Organizational Information

Organization Name:

Organization Acronym:

IMDO

Year Established:

2009

Type of organization:

Condition(s)-specific organization

Mission Statement:

The International Myotonic Dystrophy Organization helps bring awareness, education, resources and hope to people touched by Myotonic Dystrophy.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Myotonic dystrophy

Organizational Contact Information

Prefix:

Ms.

Title:

Associate Director

First Name:

Wendy

Last Name:

Robinson

Address:

2713 Loker Ave. W.

Carlsbad, CA, 92010-6610

Phone:

+1 760 918 0377

Fax:

+1 760 444 2716

Toll Free Number:

+1 866 679 7954

Email:

info@myotonicdystrophy.org

Website Address:

http://www.myotonicdystrophy.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Italian

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Students

Media

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Genetic information

Rehabilitation resource referrals

Referrals for non-medical services

Advocacy

Speakers

Telephone helpline

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Research updates

Student materials

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals