Global Genes LIVE!
09 September 2020
September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit.
Join Global Genes for a variety of engaging and educational online events, meet-ups, workshops and performances.
This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through interactive activities paired with educational programming.
This is how the Global Gene’s story began. Friends, family, and supporters of patients who are affected by rare disease started a global community. Trying to understand the confusion, the overwhelming experience of the unknown and the feelings of isolation, realising that no one is alone. Global Gene’s aim is to connect, empower and inspire the rare disease community.
Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and strategic ways to accelerate change.
If you are affected by NF, or are a carer for someone with NF, a NF supporter/advocate you find different programs or sessions that might be of interest to you. There are ways how to get involved or get informed on recent developments.
For more details:
You will be able to watch our movie "Shine A Light on Neurofibromatosis" on the Disorder Channel
Find out moreFilter News
Quantitative MRI Application being developed to help prevent vision loss in NF1 patients
Find out more about the technology being developed and how it can be used to prevent/decline vision loss in NF1 patients
Read MoreNerve Tumours UK Dolphins Family and Friends
Our new fundraising hub has it's first fundraiser! Find out more here:
Read MoreRuby Galloway (NF1) is thrown an incredible sleepover!
Ruby Galloway receives her own incredible sleepover after being nominated by nearly half of Plymouth! Find out more here:
Read MoreJonny’s Story
Jonny has chosen to open up and share his incredibly brave battle with Cancer over the past year, find out more here:
Read MoreJames on Tour
James Wiggin is taking on the Tour de France on behalf of Nerve Tumours UK – or at least a part of it.
Read MoreNerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF1 Meeting in Manchester
Have a read what was talked about at this year's National NF1 Meeting in Manchester
Read MoreLet’s Go Regional/ Let’s Go Outside
Read about the website that offers new exciting opportunities to help you find a fundraiser/event that is most suited to you
Read MoreMeet Harley
Have a read about the amazing 7 year old boy with NF1 and his fundraising family
Read MoreFunny Peculiar
Peculiar Productions has chosen to donate all their proceedings to NTUK this year! Find out more:
Read More