02 November 2022
On the 10th and 11th October, the 20th European Neurofibromatosis (NF) Meeting took place in Manchester.
This prestigious event was organised, and hosted, by Manchester University Hospitals' two nationally commissioned highly specialised services for Neurofibromatosis Type 1 and Neurofibromatosis Type 2. The services, which are based in Genomic Medicine, at St Mary’s Hospital, in Manchester are led by Dr Grace Vassallo, Paediatric Neurologist, RMCH and Professor Gareth Evans, Professor Medical Genetics, SMH, respectively.
The two day "face to face" conference was organised in conjunction with Convenzis Group Limited, events organisers, who specialise in helping UK public sector organisations collaborate and improve public-facing services. The initial feedback from some of the most influential NF clinicians and scientists, who attended the meeting, have hailed it the most successful European conference to date.
The conference attracted some 230 delegates from as far afield as the USA, Australia, Japan, Portugal and Israel, and keynote lectures were given by many of the world's leading clinicians in the field of NF. As this was the first in person NF conference for three years, it allowed for the coming together of the worldwide NF community, to be updated on the most advanced research in NF, and to foster new research and clinical collaborations, within this group of rare diseases.
Nerve Tumours UK (NTUK), being one of the official sponsors of the conference, were given the opportunity to highlight our work, and to network with clinicians, universities, researchers, pharmaceutical companies and other European Lay Organisations, who were in attendance.
We were also delighted to witness Professor Rosalie Ferner, NTUK Trustee and National Lead for NF1, and Professor Gareth Evans, Chair of the NTUK Medical Advisory Board and National Lead for NF2 being presented with Lifetime Achievement Awards, for their contribution and expertise in the field of Neurofibromatosis. The award was given by NF Patients United, the umbrella organisation for patient and lay organisations in Europe.
Karen & Alice, Nerve Tumours UK
Professor Gareth Evans
Professor Rosalie Ferner
Prior to the medical conference, on Sunday 09 October, Nerve Tumours UK also attended the NF Patients' Community Day, hosted by NF Patients United, and organised in collaboration with the NF charities based in the UK & Ireland. The programme concentrated on highlighting the support and services that were available in the UK for those diagnosed with NF, and their families. It also included interactive sessions to help the medical world further understand the needs of the community.
NTUK were again delighted to see Dr. Susan Huson, although now retired, but still an active member of the charity's Medical Advisory Board, being presented with a Lifetime Achievement Award by NF Patients United, for her contribution and expertise in the field of Neurofibromatosis, over the past decades.
Dr Sue Huson
It was an exceptionally busy few days for the NTUK team, as we also managed to slot in the annual meeting between the charity head office team and the Specialist Nurses/Advisors, in between the two main events. As all of the Specialist Support Team were due to attend the European Conference, as a cost reducing exercise, we combined the two. This annual meeting is extremely important for the charity as it is our only chance to sit down as a full team together. We review our services and operations, discuss best practices and new ideas, so ensuring that we are meeting the needs of the NF community, both now and for the future.
NF Patients Community Day videos
Watch the videos and find further information on NF Patients United on their YouTube Channel
A big thank you to everyone that was involved and attended - the community, colleagues, medics, affiliated organisations and the event hosts, for making the weekend a success.