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


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.


a/k/a: ASBAH


42 Park Road
Peterborough, PE1 2UQ
United Kingdom





800 Number




Email Address




The Shine Spina bifida * Hydrocephalus * Information * Networking * Equality is a voluntary organization dedicated to providing services to people with spina bifida and/or hydrocephalus, and their care providers. Spina bifida is characterized by malformation of the spinal column in which incomplete closure of certain vertebrae leaves a portion of the spinal cord exposed. Hydrocephalus is a condition characterized by inhibition of the normal flow of cerebrospinal fluid (CSF) and abnormal widening (dilatation) of the cerebral spaces of the brain (ventricles), causing accumulation of CSF in the skull and potentially increased pressure on brain tissue. Established in 1966, SHINE aims to keep its clients' knowledge up-to-date, extend their choices, maximize opportunities for independence, and help their integration in society. The organization's unique network of advisers provides advice and close support at times of special need to individuals and families in England, Wales, and Northern Ireland. Specialist advisers in education, continence, mobility, and medical matters back up the service. Through nationwide and regional networks, these professionals develop and maintain expertise in spina bifida and hydrocephalus so that they may inform and assist other professionals in giving the best possible service.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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 ©2015 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. .