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

Working For The NF Community and Helping to Protect and Save The NHS
Coronavirus is impacting the NHS heavily including our Specialist NF Nurses; help us support them, find out how
Read More
Leighton Linslade Rotary Club hosts Brains of Leighton Buzzard Quiz
Leighton Linslade Rotary Club hosts Quiz in aid of Neurofibromatosis type 2, find out more here
Read More
Postponed: Medicine and Me: Living with Nerve Tumours at the Royal Society of Medicine
Postponed: Find out more about the event at the Medicine & Me event at the Royal Society of Medicine here:
Read More
NF1 Teenager Support Day!
Bridie Windsor is a Deputy Clinical Nurse Specialist who has organised a support day for teenagers with NF1. Read more here:
Read More
Callum Axford’s Story
Vote for Callum's nomination for Positive Role Model (Disability) in this years National Diversity Awards!!
Read More
The results are in for our Nerve Tumours UK film nominated at the Rare diseases film festival!
Check out our film & view the results from the film festival here:
Read More_800_600_s_c1.jpg)
Noah’s Inspirational Fundraising Story
Noah Herniman, 14, raises over 1,000 Easter eggs for charity
Read More
“Going dry in January” for NF
Janet Holloway and Val Goeghegan complete dry January for Nerve Tumours UK
Read More