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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.


Nail-Patella Syndrome (UK)


Address

Beck House Beck Lane
Bingley
West Yorkshire, BD16 4DD United Kingdom

Phone

8001218298

800 Number

8001218298

Email Address

npsuk_info@yahoo.co.uk

Description

The Nail-Patella Syndrome (NPS UK) Web Site is a site on the Internet created by Alan Bates, an individual with Nail-Patella Syndrome in the United Kingdom. Nail-Patella Syndrome (NPS), an extremely rare inherited disorder, may be characterized by improper development of the fingernails and/or toenails; absence and/or underdevelopment of the knee caps (patellae); underdevelopment of certain bones and/or webbing of skin at the bend of the elbow(s); abnormal projections of bone from the upper portion of both sides of the hipbone (bilateral iliac horns); and/or, in some cases, eye abnormalities. Approximately 30 to 40 percent of affected individuals may also experience abnormalities in kidney function (nephropathy) that may be apparent during childhood or later in life. The NPS Web Site is dedicated to providing information on the disorder, enabling affected individuals and family members to locate one another, providing online visitors with linkage to additional sources of information, and offering support resources to individuals who live in the United Kingdom. (Although support resources are specific to the U.K., the majority of the information within this site is helpful for all individuals and family members affected by NPS.)

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