Rarefest 2020
20 November 2020
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The festival covers Neurofibromatosis and has various speakers from the NF community as part of its program.
In true 2020 style, RAREfest20 promises to be a virtual feast that will spark curiosity, challenge perceptions, inspire innovation and collaboration and give a voice to rare disease patients and their families.
RAREfest20 has patients at its heart with science and technology running through its veins! The full live programme is ready to view in the agenda tab above. For a peek of what you can expect, head to our highlights, speakers and exhibitors’ pages brimming with cool companies, scientists, tech experts, health pros and patients taking part.
Open to the general public, patients, families, children, students, healthcare professionals, researchers, companies. To everyone!
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Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
Read MoreEashan’s NF1 story
'Why Run'... Eashan was diagnosed with NF1 after losing his eyesight when he was 5. His mother Jen tells his story.
Read More2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
Read MoreDisclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebecca Rennison
Read MoreJo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
Read MoreNigel’s story - Normal is as normal does
Nigel lived a normal life until age 47. The next 20 years took him from NF1 to NF2 to Schwannomatosis to mosaic NF2
Read MoreWorld Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read MoreCAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read MoreNF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read More