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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Today is Giving Tuesday
Call out by Karen Cockburn, Charity Director, to donate and support the NF Community
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Runderpants fun run
Get your Runderpants here! Set up a fun run wearing some special fundraising pants
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Avastin Side Effects
Jo highlights Avastin side effects, from experience of her son Oscar's treatments, plus shared testimonies from others
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Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
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2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
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Disclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebeca Rennison
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Jo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
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World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
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CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
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