Nurse’s Conference 2020
24 June 2020
This week we had our yearly specialist NF nurses meeting with members tuning in from around the UK virtually via zoom. In attendance were Carolyn Smyth, Samantha Gaden, Helen Tomkins, Kirsty Bready, Rachel Jones and Melanie Murrell.
The meeting was an opportunity to gain valuable insight from all our nurses on their work and how the Covid19 pandemic has impacted them. Adjusting to coronavirus presented some big challenges not least, facing problems with new technologies and integrating them with current practices. The nurses work moved virtual; with clinical assessments happening over the phone or on virtual clinics – which presented new obstacles identifying symptoms and giving the correct support. All in all the feedback by those affected with NF was positive on the help and support received.
Our nurses also took on extra responsibilities including working on the extended helpline services, which was extremely busy at the beginning of the crisis. They are now all looking forward to having face to face appointments with patients, which will slowly start over the next few weeks – following governmental directives.
Their continuing efforts to take care of those affected by Neurofibromatosis throughout the pandemic did not go unnoticed. Our NF community showed their appreciation every week and our nurses are very grateful for the support & thanks the community showed them.
Filter News

Christine’s Coronation fundraising
Christine has been fundraising for NTUK for 10 years, since her grandson was diagnosed with NF1.
Read More
Megan’s NF1 story
Megan has NF1 & other complications: "I will always live my life to the fullest and not let my diagnosis stand in my way"
Read More
Shine a Light May 2023
Shine A Light Activities during World NF Month May 2023 - Get Involved!
Read More_370x280_800_600_s_c1.jpg)
Charlotte’s NF1 story
Charlotte and her brother & dad have NF1. She is running the Shine a Light Marathon during May to raise awareness
Read More
Be seen, be counted: #PicsForThe1in6
Be part of the Neurological Alliance's photo collage, representing people with neurological conditions
Read More
Understand the experience of adults living with Neurofibromatosis Type I with Plexiform Neurofibromas (NF1 PN)
Research to understand the reality of the NF1 PN journey from diagnosis to daily life, and the emotional impact that has
Read More
Nerve Tumours UK Art Drop 17 May 2023
White Label Editions & artist Anna van den Hoelden are fundraising by selling unlimited prints of World Strips III on 17 May
Read More
Stand up for Nerve Tumours UK Comedy Fundraiser
Join us on #WorldNFDay for a night of comedy at the Union Chapel, London
Read More
Prof. Meena Upadhyaya, OBE, shares her memories of attending the Coronation
Read more about a special day for Professor Meena Upadhyaya, Trustee & Member of the Nerve Tumours UK MAB
Read More