You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**IMPORTANT**

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Stickler Involved People

a/k/a: SIP

Address

15 Angelina
Augusta, KS 67010

Phone

316-775-2993

Fax

--

800 Number

--

TDD

--

Email Address

sip@sticklers.org

Website

http://www.sticklers.org

The Stickler Involved People (SIP) is a voluntary organization dedicated to educating and giving support to those affected by Stickler syndrome. Stickler syndrome is a rare genetic disorder that affects connective tissue, including the joints, eyes, palate, heart, and hearing. The disorder is characterized by possible vision problems, hearing loss, early arthritis, cleft palate, and heart murmurs. It is extremely variable from case to case. Established in 1995, the organization focuses on patient networking and communication as the most effective and personal means of helping people who have this condition. In addition, the group utilizes its newsletter and on-line correspondence to further develop interpatient contact. SIP publishes informational brochures, a quarterly newsletter, and physician updates, and offers a networking service and a database of information for affected individuals. SIP also has an annual conference. New in 2003 is a college scholarship for a high school graduate diagnosed with Stickler syndrome.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .