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?
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
CAR Research - exploring family planning decisions
Research Advisors required to help explore what influences decisions about having children and what support would be helpful
Read MoreCorporate Fundraising 2024
Find out some of the different ways your company can support Nerve Tumours UK
Read MoreMatthew’s story
Matthew, who has NF2 and is a dedicated Scout, has been awarded the prestigious Cornwell Scout Badge
Read MoreElla’s editorial
Have a read of Ella's editorial as she shares her brave journey against NF1 with us!
Read MoreConnected Recovery - Tackling Loneliness
A report from the All-Party Parliamentary Group (APPG) on Tackling Loneliness and Connected Communities
Read MoreChristmas Message from the Nerve Tumours UK team
Thank you from all of us at Nerve Tumours UK
Read MoreSpecialist NF Nurses/ Advisors’ Conference 2023
Find out more about this year's meeting with our Nurses
Read MoreNational NF2 Meeting 2023
A report from the 2023 England NF2 meeting, with healthcare professionals & charities working together for the NF2 community
Read MoreAvastin Side Effects
Jo has collated shared personal experiences, with medical and general advice on Bevacizumab (brand name Avastin)
Read More