Helpline Summary

By Annette Ribeiro, Helpline Adminstrator

In the past 12 months the helpline has assisted a total of 121 people. Of these, 90 were received by email, and 31 by telephone.  Advice was given to all, and for 42 enquirers, specific advice was provided in interviews lasting up to 30 minutes. 

While most of these enquiries have come from all over the UK, some have been international, including Australia, South America, and the Far East. In most cases the enquirer was referred to the nearest national or international Marfan syndrome clinic. Reassurance was provided wherever possible, and relevant pamphlets were posted, downloaded, or the enquirer was referred to our website where these could be read. 

Phone calls took on average 20 minutes, and follow-ups were arranged. These figures show the trend to increasing requests for help. The Marfan Trust is committed to this valuable service and is actively seeking further funding for 2019.

Donations towards a total of £17,000 are requested, to provide continuity of funding for the helpline which is accessible to all supporters of the Marfan Trust, free of charge. Thank you for your support