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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.

International Costello Syndrome Support Group

a/k/a: ICSSG


90 Parkfield Road North
New Moston
Manchester, M40 3RQ
United Kingdom


44 -161- 682 2479

800 Number




Email Address


The International Costello Syndrome Support Group is a voluntary, non-profit organization dedicated to providing support and information to individuals and families affected by Costello Syndrome. Costello Syndrome is a rare disorder characterized by growth delay after birth (postnatal), leading to short stature; excessive, redundant loose skin on the neck, palms of the hands, fingers, and soles of the feet; development of benign (non-cancerous) growths (papillomata) around the mouth (perioral) and nostrils (nares); mild mental retardation; and/or characteristic facial appearance. Established in 1996, the group publishes a newsletter approximately every four months. It serves as a source of information for affected families as well as a forum for information exchange and the sharing of personal stories.

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