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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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Living Different: Patricks’s NF2 Blog

Read his attempt to build people's understanding of the challenges with disabilities

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Beth’s Novasper Online Dog Show 2021

Find out how you can get involved in this year's fluffiest and loveable online dog show!

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Christian’s Story

Christian's Mum, Ellie, share's their journey with NF & why they decided to get involved with this year's Garden Challenge!

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Tate’s Shine A Light Marathon

Tate's mum shares his incredible journey with NF & why he took part in our Shine A Light Marathon to help others like him

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Virtual Medical Meetings

Conferences in 2020 went online meaning the whole nursing team and key members of the head office were able to attend

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Connection Coalition

NTUK joined the Connection Coalition with the aim of working together to build strong relationships & connected communities

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Rare Disease Day 2021

Nerve Tumours UK joined events showcasing Rare Disease Day hosted by the Genetic Alliance on 28 February 2021

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Kate, NF Mummy Community & Support

Kate tells us why she started the NF1 Mummy community group online

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Alex’s story - Support in the Workplace

Alex Hetherington shares how iNForming his work colleagues about his neurofibromatosis created a supportive work environment

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