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

“Framing the face: History, Emotion, Transplantation” a blog from James Partridge
Find out more about the blog and what is concerns here:
Read More
A Spooktacular Halloween day for NTUK
Find out more about the wonderful fundraising event here:
Read More
Nicks Triathlon in Support of his daughter Eilidh
Find out more about Nick's Triathlon and his daughter's experiences with NF1 here:
Read More
Tom GK- Hearing Loss: The Musical
Find out more about the musical and how you can secure your ticket here
Read More
Nerve Tumours UK joins the “Embracing Complexity” Coalition
Find out more about the coalition we have decided to join
Read More
Researching NF1
Rory Deasy has conducted research into the treatment of children with NF1. Here he talks about his research journey.
Read More
Megan’s Journey
Megan talks about her experiences of being a student with NF and what she took away from the NF conference in San Fransico
Read More
Aldo goes to Primary School
Find out more about the book aimed at helping people understand the life of an autistic boy going through primary school here
Read More