Foundation for Nager and Miller Syndromes

General Organizational Information

Organization Name:

Organization Acronym:

FNMS

Year Established:

1989

Type of organization:

Condition(s)-specific organization

Mission Statement:

FNMS is an international support group dedicated to helping those affected by Nager and Miller syndromes. We serve as a clearinghouse of information and link families seeking support, hope and advice.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Postaxial Acrofacial Dysostosis (POADS)

Nager Syndrome

Organizational Contact Information

Title:

Director

Degree:

BA Business Administration

First Name:

DeDe

Last Name:

Van Quill

Address:

13210 Southeast 342nd Street

Auburn, WA, 98092-8505

United States

See map: Google Maps

Phone:

+1 253 333 1483

Fax:

+1 253 288 7679

Toll Free Number:

+1 800 507 36673667

Email:

ddfnms@aol.com

Website Address:

http://www.fnms.net

Resources and Services Provided

Languages spoken:

English

German

Greek

Spanish

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Grandparents

Health care professionals

Researchers

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Genetic testing

Genetic information

Financial referrals

Advocacy

Speakers

Pen pal program

Telephone helpline

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Research updates

Video(s)/Movie(s)

CD Roms

Audiotape(s)

Lending library

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Financial assistance for:

Scholarships

Disease Characterization:

Phenotype/genotype correlation studies

Research Management:

Linking researchers and families

Providing information about clinical trials