National Marfan Foundation

General Organizational Information

Organization Name:

Organization Acronym:

NMF

Year Established:

1981

Mission Statement:

Together with our National Volunteer Network, comprised of Chapters, Support Groups and other local members, we disseminate accurate information, provide support and foster research nationwide, as well as to the international Marfan community. Since 1995, the Foundation has been committed to helping not only those with Marfan syndrome, but also those with related connective tissue disorders.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Marfan syndrome

Organizational Contact Information

Title:

Director of Education and Public Awareness

Degree:

First Name:

Jonathan

Last Name:

Martin

Address:

22 Manhasset Avenue

Port Washington, NY, 11050

Phone:

+1 516 883 8712

Fax:

+1 516 883 8040

Toll Free Number:

+1 800 8627926

Email:

info@marfan.org

Website Address:

http://www.marfan.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Legislators

Media

Students

Researchers

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Peer support

Referrals for non-medical services

Non-medical services

Peer-to-peer counseling

Awareness programs

Political action

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Pen pal program

Advocacy

Chat room

Educational materials include:

Fact sheet(s)

Video(s)/Movie(s)

Slides

Journal articles on condition

Pamphlet(s)

Booklet(s)

CD Roms

Research updates

Newsletter

Bibliography

Resource guide

Website

Student materials

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals