Gorlin Syndrome Survey - Summary Overview

In August 2013, the Gorlin Syndrome Group conducted a media outreach activity to highlight its recent survey.

The results of the survey identified that individuals were undergoing multiple surgeries to manage their condition, without being offered emotional support. 39 pieces of media coverage were achieved, including:

  • 1 national newswire
  • 3 national print newspapers
  • 1 regional radio station
  • 6 regional print papers
  • 27 regional online newspapers
  • 5 additional online and medical articles

As a result of the media outreach activity, there were a total of 48,000,000 opportunities to see key messages appearing in print, online and broadcast coverage.  Numerous articles featured interview and comment from representatives of the Gorlin Syndrome Group, helping to add depth and detail to the coverage.  A selection of the interviews are included in the links below:

Mancunian Matters

Daily Record

Manchester Evening News

Crewe Guardian

Western Morning News

Daily Echo

Bucks Free Press

Medical News Today

We are grateful to all who participated in the interviews and thank them for their time.

 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361 
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