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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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Eden Study

Investigating early social, communication and attention development in babies who have NF1/ or a parent has NF1

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Douglas Thomson’s NF1 Story

Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him

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Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith

Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith

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Student Voice Prize 2021

The 2021 Student Voice Prize opens on 6th October! #DareToThinkRare for the 8th annual essay competition!

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Centre for Appearance Research - Parent Support Materials Study

The Centre for Appearance Research is doing a study on parent support materials - can you help?

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Centre for Appearance Research - YP Face IT

YP Face IT offers online support for young people with conditions or injuries affecting their appearance

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Counselling support from Changing Faces

Changing Faces - Counselling support: confidential one to one support sessions for people with a visible difference

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Tim’s Story: Living With Neurofibromatosis – it’s a family thing

Tim tells us how Nerve Tumours UK proved to be an invaluable resource and support to him and his family as he was growing up

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Dalvinder’s 100km Ultra Challenge for NF

Dalvinder on the 100km Ultra Challenge Thames Path walk to raise money for NF

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