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
Sam’s Marathon
Sam, our Specialist NF Nurse for Merseyside & the North West, is running the London Marathon - her very first Marathon!
Read MoreNF Patients Community Day
The NF Patients Community Day is on Sunday 9th October 2022 - register to attend virtually
Read MoreAppearance, Identity & Law workshop
Appearance, identity & law workshop at Queen Mary University London School of Law
Read MoreAlfred the Pirate
Seven year old Alfred the Pirate takes NF1 in his stride, and is supported by Specialist NF Nurse Mel
Read MoreNicole’s NF1 story & skydive
Nicole shares her NF1 journey and her motivation to inspire children with disabilities to achieve whatever they want to do
Read MoreSarah’s NF1 story & Langmead fundraising
Sarah describes her daughter Hannah's NF1 journey and organising a corporate charity day fundraiser at Langmead Herbs
Read MoreMolly & Alfie
Mollie has NF1 - her big brother Alfie & friend Kaelan are running to raise awareness & funds for NTUK
Read MoreStudy - Resilient Youth with NF
Adolescents with NF (12-17 years old) are wanted for an Online Harvard research project
Read More