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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Shine A Light on NF May 2025
The Shine A Light on NF 2025 awareness campaign had 176 buildings around the UK & the Republic of Ireland lit up blue!
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Mohamed’s NF Story
Mohamed opens up about his NF journey and why he's now thriving after being diagnosed.
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Do charity ads get on your nerves?
The 4th NTUK and RBH digital media awareness campaign features a cheeky attention grabbing advert
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Laura’s NF1 Awareness Story
Laura shares her NF1 story and tells us how she is raising awareness for World NF Awareness Month
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Living with Neurofibromatosis Type 1: A Journey of Resilience, Transformation, and Impact
Our new charity ambassador, Amit Ghose, shares his inspirational story.
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NF2 Quality of Life Questionnaire
The Massachusetts General Hospital NF research team would like your help to test a new quality of life questionnaire
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Running for a Cure: Laura and Gonzalo Take on Half Marathons for NF1
Laura and Gonzalo; founders of CureAge Therapeutics, lace up for NF awareness.
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Diet, fatigue and NF1
Take part in this research study which will explore the connection between diet, fatigue and NF1 in children and young adults
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Our Ambassadors
NTUK is delighted to introduce you to our three new ambassadors, Emily Owen, Georgia Baum & Amit Ghose.
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