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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Benjamin’s NF1 story
11 year old Benjamin has NF1 and is the inspiration for his family's fundraising
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Lynne Highy joins our team of Specialist NF Advisors
Read all about the newest addition to our team.
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NF Academy 2025: Georgia’s Blog
NTUK ambassador Georgia Baum shares her transformative experience of attending the NF Academy 2025 in Barcelona
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Craig’s story
Craig describes his mosaic NF2 related hearing loss, and how a cochlear implant & hearing aids have changed his life
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George’s Schwannoma Story
George shares his experience of being diagnosed with a schwannoma and why he's lacing up for NF awareness.
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JoJo’s NF1 Story
JoJo shares how her NF1 journey has affected her; how her pain and loss have become foundations of courage and resilience.
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Tristan’s Story: Hope & Resilience
Discover Tristan's NF1 story: Finding home, hope & the power of sport.
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10 mile walk for Lily
Read more about the 10 mile sponsored walk for Lily, organised by Claire, with her nursery team, family & friends taking part
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NF & Sport: Joy’s Journey
Find out more about the impact of sport on Joy's NF1 journey & how running changed her life forever.
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