Stickler Involved People

General Organizational Information

Organization Name:

Organization Acronym:

SIP

Year Established:

1995

Brochure thumbnail:

Type of organization:

General support or information organization

Mission Statement:

The mission of Stickler Involved People (SIP), a not-for-profit organization, is to educate and give support to all those affected by Stickler syndrome.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Temporomandibular Joint and Muscle Disorders (TMJDs)

Scoliosis

Rheumatic Diseases, Childhood

Pierre Robin Sequence

Macular Degeneration

Kyphosis

Kniest Syndrome

Hypochondroplasia

Fibromyalgia

Eye Disorders

Cleft Palate

Cataracts

Arthritis

Organizational Contact Information

Title:

Coordinator

First Name:

Patricia

Last Name:

Houchin

Address:

15 Angelina Drive

Augusta, KS, 67010

Phone:

+1 316 775 2993

Email:

SIP@sticklers.org

Website Address:

http://www.sticklers.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

French

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

The public

Teachers

Students

Range of services include:

Referrals to local chapter or group

Referrals to matching individuals/families

Medical referrals

Genetic testing

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Bibliography

Video(s)/Movie(s)

Resource guide

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Financial assistance for:

Scholarships

Cohort Development:

Blood and Tissue Banking