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.
Support Organization for Trisomy 13/18 and Related Disorders, UK
a/k/a: SOFT UK
c/o Christine Rose
48 Froggatts Ride
West Midlands, B76 2TQ SOFT
The Support Organisation for Trisomy 13/18 and Related Disorders (SOFT UK) is an international, UK-based organization that serves families affected by trisomy 13/18, related disorders, and rare conditions for whom no other organization exists. SOFT provides support, assistance, and information for families in many different situations and stages of diagnosis, caregiving, and for some, grief. SOFT offers informational packets, booklets, a "link list"networking service, a newsletter, support groups, patient education, advocacy, a journal, a database, and a variety of audio-visual aids. SOFT serves the UK, the USA (in conjunction with SOFT USA), Scandinavia, Europe, New Zealand, and Australia; and through member resources, SOFT supports the English, Italian, French, German, Danish, and Swedish languages.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and that credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions are strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.