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
Adam’s Story
Adam has NF1 yet is still one of the most active and athletic people in the UK. Read about his fascinating story here:
Read More
Littlewood’s Charity Night
Have a read of yet another successful charity night hosted by the Littlewoods
Read More
Emily Owen Positive Role Model (Disability) Award Nomination
Vote for our tustee Emily Owen at this year's National Diversity Awards 2019.
Read More
Research Outlook with Prof Gareth Evans
Have a read on some of the latest research with Prof Gareth Evans
Read More
ICAEW Worcestershire Annual Dinner and Ball Fundraiser for NTUK
The ICAEW Worcestershire Annual Dinner and Ball raised an incredible amount for us this year! Find out more here:
Read More
We are Family London Marathon
Have a read of the remarkable journey the White family has undergone in support of their young daughter Gaby who has NF.
Read More
Shine a Light on Neurofibromatosis
World Neurofibromatosis Awareness Day - May 17th. Help us raise £ 26,500 for 26,500 people in the UK who have nerve tumours.
Read More
Jem Musselwhite and Rich White are fundraising by walking the Pilgrims’ Way
Jem and Rich are walking more than 100 miles to raise money for Nerve Tumours UK. Find out more here:
Read More
Meet Rachael
Rachael Reynolds is a 43-year-old mother of four, living in Huddersfield. She recently appeared in the Channel 5 programme,
Read More