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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Christian’s Story
Christian's Mum, Ellie, share's their journey with NF & why they decided to get involved with this year's Garden Challenge!
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Tate’s Shine A Light Marathon
Tate's mum shares his incredible journey with NF & why he took part in our Shine A Light Marathon to help others like him
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Connection Coalition
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Kate, NF Mummy Community & Support
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Alex’s story - Support in the Workplace
Alex Hetherington shares how iNForming his work colleagues about his neurofibromatosis created a supportive work environment
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Read Emma's incredible awareness raising activities for NF in her local community, Liverpool.
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Our NF community share why they are taking on the World NF Day: 2.6 mile Garden Challenge!
Taking part in the World NF Day: 2.6 Garden Challenge - We want to hear from you!
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