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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Benjamin’s NF1 story
11 year old Benjamin has NF1 and is the inspiration for his family's fundraising
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Lynne Highy joins our team of Specialist NF Advisors
Read all about the newest addition to our team.
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NF Academy 2025: Georgia’s Blog
NTUK ambassador Georgia Baum shares her transformative experience of attending the NF Academy 2025 in Barcelona
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Craig’s story
Craig describes his mosaic NF2 related hearing loss, and how a cochlear implant & hearing aids have changed his life
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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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