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

Jensen’s NF1 story
Stuart describes Jensen's first days post birth, subsequent diagnosis of NF1 plus his & wife Claire's hopes for his future
Read More
TSL’s Charity of the Year
Specialist Nurse Tracey Kenyon launches TSL’s corporate funding to introduce NTUK & welcome guest of honour, 2 year old Evie
Read More
Online – Accessibility – We have the tools to help!
The NTUK website has accessibility tools to give you easier access to online & digital content
Read More
My life with Pheo
This story, written by someone with NF1, describes symptoms leading to a phaeochromocytoma diagnosis
Read More
Resources Survey: Initial Diagnosis 2023
We received many responses to our survey asking what would you have found helpful after your initial diagnosis
Read More
Community Fundraising Call Out
Calling all community fundraisers - we need your help, please!
Read More
Owen family Awareness Event
The event featured guest speaker Prof. Meena Upadhyaya OBE, Member of our Board of Trustees & Medical Advisory Board
Read More
Running for Wilbur
Tim is running the Guildford 10k in October, to show support to his son Wilbur who has NF1
Read More
Alice’s NF studies
Alice is researching healthcare experiences of individuals with NF1 for her Genetic & Genomic Counselling MSc
Read More