Moebius Syndrome Foundation

General Organizational Information

Organization Name:

Year Established:

1994

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to provide information and support to individuals with Moebius Syndrome and their families, promote greater awareness and understanding of Moebius Syndrome, and advocate for scientific research.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Moebius Syndrome

Organizational Contact Information

Degree:

First Name:

Vicki

Last Name:

McCarrell

Address:

PO Box 147

Pilot Grove, MO, 65276

Phone:

+1 660 834 3406

Fax:

+1 660 882 3018

Email:

vickimc@iland.net

Website Address:

http://www.moebiussyndrome.com

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Referrals for non-medical services

Non-medical services

Telephone helpline

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Research updates

CD Roms

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Scholarships

Research Management:

Linking researchers and families

Participant recruitment

Awarding research grants