Support Organization for Trisomy 18, 13 & Related Disorders

General Organizational Information

Organization Name:

Organization Acronym:

SOFT

Year Established:

1979

Mission Statement:

SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders. Support is provided during prenatal diagnosis, the child's life and after the child's passing. SOFT is committed to respect a family's personal decision - in alliance with a parent / professional partnership.

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Trisomy 13

Organizational Contact Information

Title:

President

First Name:

Barb

Last Name:

VanHerreweghe

Address:

2982 South Union Street

Rochester, NY, 14624-1926

Phone:

+1 585 594 4621

Fax:

+1 585 594 1957

Toll Free Number:

+1 800 716 7638

Email:

barbsoft@rochester.rr.com

Website Address:

http://www.trisomy.org

Resources and Services Provided

Information provided for:

Other

Range of services include:

Referrals to local chapter or group

Medical referrals

Peer support

Referrals for non-medical services

Other

Telephone helpline

Other

Educational materials include:

Fact sheet(s)

Video(s)/Movie(s)

Slides

Booklet(s)

Bibliography

Other

Conferences/workshops for:

Researchers

Professionals

Other

Financial assistance for:

Scholarships

Other