The International Rare Disease Showcase 1st – 3rd February 2022
21 January 2022
Rare Disease Showcase Series, now in its sixth year, is a celebration of innovative rare disease projects across the UK, and far beyond.
The event covers questions and topics that are relevant to the Neurofibromatosis community. Registration is free.
With the world gradually emerging from the pandemic, the importance of placing rare diseases on the global health agenda has never been greater. Equity of healthcare, inclusion, and the challenges of isolation are recognised as pressing issues worldwide, and are all challenges faced by those living with rare diseases on a daily basis.
While COVID-19 brought social isolation to many, it also opened up the world through digital meetings and connections – in this year’s showcase the organiser wants to highlight those international collaborations that are aiming to drive the field of rare diseases forward, as well as studying the differing impact and challenges of working in rare disease in different territories around the world.
The International Showcase is designed to be a unique event, with interactive sessions taking place over a three-day period, including conversations on policy, patient advocacy, access and approval, new technologies, research, and data collection. The online stage will include talks from across the rare disease spectrum, supplemented by roundtable discussions, networking sessions, one-to-one video chats, virtual exhibitions and more.
The Rare Disease Showcase is an event for everyone – whether patient group, clinician, pharmaceutical representative, consultant, researcher, or student.
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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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Safiya’s NF1 Journey
Find out more about Safiya & how her NF1 diagnosis has made her 'determined to make a difference'.
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The Boy Who Played Cricket
Take a look behind the scenes of team NTUK's visit to the 'The Boy Who Played Cricket' opening.
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Ella’s Story
Ella shares her insights into campus life with NF; her victories & hurdles & the importance of self- belief.
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Amit Ghose: The Unscripted Podcast
Caught the brand new pod by NTUK Ambassador Amit Ghose? Everything you need to know about The Unscripted Podcast inside.
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