NF1 PN Impact on Patients’ and Caregivers’ Lives
23 March 2021
Do you have NF1 with plexiform neurofibromas (NF1 PN)? Are you a parent of someone with NF1 PN? Do you care for someone with NF1 PN? If yes to any of the questions, please share your views by completing an anonymous survey, which will help healthcare decision-makers better understand the challenges people with NF1 PN and their caregivers face.
Why Is This Survey Important?
The anonymous results will give healthcare decision-makers a better understanding of the challenges people with NF1 PN and their caregivers face in their daily lives. This information can be used to understand the benefit of potential new treatments and to help determine if certain NF1 PN treatments should be funded by the National Health Service (NHS). We hope that the study results will be presented at academic conferences and published in peer-reviewed medical journals so that the NF1 community can learn from these findings, and other patients with NF1 PN can potentially benefit from your experiences being shared.
Who Can Take Part?

In order to complete the survey, participants must be able to speak English and be based in the UK with access to the internet on a laptop or desktop computer. Children and teenagers under 16 years of age and any young person, over 16, who is not capable of giving consent should complete the questionnaire with the consent and in the presence of their parent or guardian.
What Would We Ask You to Do?
We would like to invite you to complete an anonymous survey about your physical and mental wellbeing, and/or the physical and mental wellbeing of the person you care for.

For More Information
Please contact Karen Cockburn info@nervetumours.org.uk. This study is being run by Costello Medical, an independent research consultancy.
Filter News
_2_800_600_s_c1.jpg)
NF & Sport: Joy’s Journey
Find out more about the impact of sport on Joy's NF1 journey & how running changed her life forever.
Read More_5_800_600_s_c1.jpg)
Safiya’s NF1 Journey
Find out more about Safiya & how her NF1 diagnosis has made her 'determined to make a difference'.
Read More_1_800_600_s_c1.png)
The Boy Who Played Cricket
Take a look behind the scenes of team NTUK's visit to the 'The Boy Who Played Cricket' opening.
Read More_800_600_s_c1.jpg)
Ella’s Story
Ella shares her insights into campus life with NF; her victories & hurdles & the importance of self- belief.
Read More_800_600_s_c1.png)
Amit Ghose: The Unscripted Podcast
Caught the brand new pod by NTUK Ambassador Amit Ghose? Everything you need to know about The Unscripted Podcast inside.
Read More
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.
Read More_2_800_600_s_c1.jpg)
3BM & Fusion’s Purple Forum nominate Nerve Tumours UK as their Charity of the Year
Take a look inside Purple Forum and how they're raising awareness and funds for the NF community.
Read More_2_800_600_s_c1.jpg)
George, Alisya’s & Leo’s NF1 Story
Find out how George and his team at Rolls Royce are raising NF awareness because of NF hero Leo.
Read More