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NF1, Plexiform Neurofibromas Market Research Study

04 May 2020

NF1, Plexiform Neurofibromas patient voice study, paid market research.

The purpose of the research is to help our sponsor, a pharmaceutical company, better understand how they can support people with NF1 (neurofibromatosis type 1) and PN (plexiform neurofibromas) and their caregivers. To achieve this, we would like to understand the journey yourself/the person you care for has been on in living with NF1 with PN; with the ultimate goal to help people like yourself/the person you care for in the future.

We would like to conduct a few interviews via video-call with parents/ caregivers, plus a few ‘homework’ exercises. Your total involvement will take approx. 90 minutes. 

You will receive a financial reward for your participation.

Any information you provide us with will be treated confidentially and will be completely anonymous.

Taking this opportunity to have your voice heard would greatly help us further our research, and your participation would be hugely appreciated. If you want to participate or have any questions, please contact me, Jason Seymour, at Adept Field Solutions Ltd. by email Jason.seymour@adeptfield.com or call this number 0203 432 8217

More information about Adept Field Solutions can be found here: www.adeptfield.com

Many thanks in advance for your participation.

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NF1 research award first for UK consultant

Dr Shruti Garg is the first non-US resident to receive NF1 $555,000 research award.

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Polly’s Story (as told by Mum Emily)

"Despite being on weekly chemotherapy she is a happy child and never fails to inspire us all"

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EDEN Study Progress Report

The EDEN study has enrolled 30 babies and toddlers to understand how infants with NF1 develop.

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Ella’s story

Have a read of Ella's story here. An uphill battle which we know she will turn around!

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Grace’s Story

Have a read of Grace's story and she overcame her insecurites surrounding her NF

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Helpful Charities

Find some of the other helpful charities that may be able to support you here

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Sophia and Harvey’s story

"Despite all that, Harvie is a happy little boy who enjoys nursery and loves his favourite things"

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Lucy’s Story

"I love him, and I couldn't be without him, regardless of whether he was sick or healthy."

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Jaycee’s Story

Have a read of Jaycee's incredible story and how she has overcome some major difficulties in her life.

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Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

Website by Optima.

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Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

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Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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