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
Carers Rights Day. Diane’s Story
Find out more about Diane's life as a carer and how more should be done for unpaid carers in the UK
Read MoreNF1 PN Impact on Patients’ and Caregivers’ Lives
If you have NF1 with plexiform neurofibromas or you care for someone with NF1 PN help shape future healthcare support
Read More24 Hour Marathon – Three Brothers Running for the Fourth
Toby, James & Alex take on an epic 24 hour marathon race to commemorate their brother Tristan
Read MoreCentre for Appearance Research NF Survey - Results
Find out how you can take part in CAR's online survey about NF parenting and caring experiences.
Read MoreShare your Covid-19 Story - Survey Results
Embracing Complexity share the results of their impact of Covid19 survey, find out more
Read MoreHour of Power – Love Yourself Valentine’s Day workout for NF
Thanks to all those that got their hearts pumping this Valentine's Day for our NF community!
Read MoreRare Disease Day 2021 and Rare Reach Festival
Find out how you can get involved in the first ever Rare Reach Festival and make sure the Rare communities voice is heard!
Read More