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Raising awareness of Neurofibromatosis

On the 17th of May the Neurofibromatosis (NF) team celebrated the first International NF day.   The Neurofibromatosis  Type 1 (NF1) team had a stand in the atrium of the children's hospital where they gave away donated cups of Costa café au-lait coffee in return for learning about NF1 and the café au lait marks.  Lots of hospital staff and members of tNewspaper coverage courtesy of Manchester Evening News (MEN Media)he public showed interest in the condition, with several people specifically coming to the stand as them or a member of their family had the condition and they wanted more information.   

We also received media coverage about the day and two of our patients appeared in the Manchester Evening News and Lancashire Telegraph to help us raise awareness of the condition.

The 21st - 25th of May was NF1 week on Netmums.  Netmums is one of the fastest growing online parent support networks in the country with over 5 million people visiting the Netmums web site each month.  During the week a live web chat forum was held where people posted questions and took part in online conversations.  Two online clinics were held during the week, the first being led by Dr Huson, the specialist nurses and Rosemary Abbot from the Neuro foundation, with the second clinic being led by Dr Emma Howie (Clinical Psychologist for the NF1 team) and the specialist nurses.  This was a very successful week with 18 questions posted which needed replies, and a further 1191 views of the conversations and clinics.  The majority of people who posted on the site were not known to the NF1 service with many never having had contact with others affected by the condition.  Families shared their stories and offered to arrange meetings in order to offer support to each other and three parents were advised to contact their GP for a referral to the complex NF1 service. Over a quarter of the people who posted questions contacted Netmums to say thank you.  This was the first time Netmums have hosted a forum on a specific condition, and they were extremely pleased with the response of their members. The NF1 team are in discussions with Netmums about how to follow up this successful initiative!