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 Gamble Across Britain
James will be cycling the length of the country this September- that's 980 miles! Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Buckingham-palacePage-Preview-800-x-500-px_800_600_s_c1.png)
Nerve Tumours UK at Her Majesty The Queen’s Buckingham Palace Garden Party
Nerve Tumours UK attended one of Her Majesty The Queen's Summer Garden Parties. Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/DanPage-Preview-800-x-500-px_800_600_s_c1.png)
Dan’s Story
Dan wants everyone to know that NF1 comes in different forms. Have a read of his courageous story here:
Read More![](https://nervetumours.org.uk/images/made/images/common/myvisible_difference_3_800_600_s_c1.jpg)
#MyVisibleDifference Changing Faces
#MyVisibleDifference Changing Faces - Nerve Tumours UK attended the of My Visible Difference Report by Changing Faces
Read More![](https://nervetumours.org.uk/images/made/images/common/Carlisle-Page-Preview-800-x-500-px_800_600_s_c1.png)
Register to attend our NF1 information day in Carlisle
The day is designed so that our specialists can give you information and insight about NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/Nerve_Tumors_UK_Imax_1_800_600_s_c1.jpg)
Shine a Light 2019 Success!
Check out some of the stunning photos from our extremely successful Shine a Light On Neurofibromatosis 2019 campaign
Read More![](https://nervetumours.org.uk/images/common/RCN-3Page-Preview-800-x-500-px.png)
Nerve Tumours UK attends Royal College of Nursing Congress
Find out more about the RCN Congress and Nerve Tumours UK participation here:
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