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.

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
United Kingdom





800 Number


Email Address




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.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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