Shwachman Diamond Syndrome Foundation

General Organizational Information

Organization Name:

Organization Acronym:

SDSF

Year Established:

1994

Type of organization:

General support or information organization

Mission Statement:

Our organization's mission is to advocate and support research towards a cure and improve medical management of symptoms, educate the medical community and general public about Shwachman Diamond Syndrome, provide emotional support to patients and their families, link families through medical/family conferences to share experiences and ideas disseminate current medical information, and support an international patient registry and international medical conferences.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Shwachman-Diamond syndrome

Organizational Contact Information

Prefix:

Ms.

Title:

President

First Name:

Blair

Last Name:

Van Brunt

Address:

127 Western Avenue

Sherborn, MA, 01770

United States

See map: Google Maps

Toll Free Number:

+1 1 888 825 7373

Email:

info@shwachman-diamond.org

ListServe:

jmlmowery@yahoo.com

Website Address:

http://www.shwachman-diamond.org

Resources and Services Provided

Languages spoken:

English

Spanish

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 research studies

Medical referrals

Genetic information

Advocacy

E-mail list

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

No Revisions:

I have reviewed my listing and there are no updates to be made at this time.