RARE Champion of Hope Celebration
20 October 2020
Groundbreakers. Leaders. Advocates.
The rare disease community is full of people who inspire us all through innovation, research, compassion and a relentless spirit to affect positive change. Through the RARE Champion of Hope Awards, we honor and recognize true champions for rare disease. This year we will be recognizing leaders who have made a significant impact in advocacy, industry, medical care, science, as well as up-and-coming rare disease leaders. Awardees will be announced at this year’s RARE Champion of Hope Celebration.
Register for your place at the RARE Champion of Hope Celebration, taking place 12th November 2020, 7pm-8pm. RSVP today for a virtual gala; experience exciting food and drink demos, entertaining performances, and inspiring stories of hope from the rare disease community.
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Owen family Awareness Event
The event featured guest speaker Prof. Meena Upadhyaya OBE, Member of our Board of Trustees & Medical Advisory Board
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Running for Wilbur
Tim is running the Guildford 10k in October, to show support to his son Wilbur who has NF1
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Alice’s NF studies
Alice is researching healthcare experiences of individuals with NF1 for her Genetic & Genomic Counselling MSc
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Centre for Appearance Research - The Parenting Toolkit
Research evaluation to find out how effective ‘The Parenting Toolkit’ is at supporting parents of children with NF
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Celtic Crossing NTUK fundraiser
On Wednesday 28 June, a team of 8, led by Paul Aubery, paddled from the Isles of Scilly to Sennen Cove in Cornwall.
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NF Awareness Day Fundraiser at Fyling Hall School
Bea's school held a blue & green themed fundraiser on World NF Awareness Day
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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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Bethany’s South Coast Challenge
Bethany is taking on the 25km South Coast challenge to give back after recovering from nerve tumour surgery
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Eden-P Research Study
Participants required for research study for pregnant women who have a family history of NF1
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