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 more![](/images/common/rare_disorder_channel_global_genes_live1024x768.jpg)
Filter News
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A Big “Thanks” for Team Nerve Tumours UK running the London 2020 Marathon!
We want to give a great big thank you to all of you who took part in this year's Virtual London Marathon!
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How To Use Lipspeakers – Support For Those Affected By Hearing Loss
Frances Harris at Bridge Lipspeaking shares how lipspeaking can help those with hearing loss or total deafness caused by NF2
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Living with Neurofibromatosis Type 1: An Anthropological Study
Get involved and share your story to help increase cross-cultural understanding and awareness of NF1
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Nimo’s NF1 Story
Read Nimo's incredible journey of coming to terms living with NF1 & how Nerve Tumours UK has changed her life for the better
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Georgia’s Schwannoma Story
Read Georgia's inspirational Schwannoma story and how she had to fight for her diagnosis
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Voices of Visible Difference #YoureNotAlone Men’s Campaign
Two-thirds of men with visible difference are affected in their day to day life. Read more
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Childhood Neurological Conditions Survey
Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis
Read More![](https://nervetumours.org.uk/images/made/images/common/Karen_Portrait_Colour_370x280_2_800_600_s_c1.jpg)
We’re Here for You, Our NF Community.
A big thank you from Karen our Charity Director - your support has been amazing!
Read More![](https://nervetumours.org.uk/images/made/images/common/Global_Genes_Virtual_event_370x280_800_600_s_c1.jpg)
Global Genes LIVE!
Join Global Genes September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit.
Read More