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
![](https://nervetumours.org.uk/images/made/images/common/Michael_Fry_Preview_Coronavirus_Statement_370x280_800_600_s_c1.png)
Statement by Michael Fry our Chair of the Board of Trustees
The impact of the corona virus on the charity sector and Nerve Tumours UK's continued support to those affected by NF
Read More![](https://nervetumours.org.uk/images/made/images/common/person-holding-blue-ballpoint-pen-on-white-notebook-669610nologopreview_800_600_s_c1.png)
NF1, Plexiform Neurofibromas Market Research Study
Find out more about an NF1, Plexiform Neurofibromas market research survey
Read More![](https://nervetumours.org.uk/images/made/images/common/Rebecca_Rennison__Rachel_Jonesa_800_600_s_c1.png)
Statement by Rachel Jones & Rebecca Rennison our Specialist Neurofibromatosis Nurses UK
A statement on coronavirus by Rachel Jones & Rebecca Rennison specialist Neurofibromatosis nurses in the North East & Cumbria
Read More![](https://nervetumours.org.uk/images/made/images/common/samantha-gaden_370x280_800_600_s_c1.png)
Statement by Samantha Gaden our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Samantha Gaden specialist Neurofibromatosis nurse in the North West
Read More![](https://nervetumours.org.uk/images/made/images/common/melanie-murrell_3_800_600_s_c1.png)
Statement by Melanie Murrell our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Melanie Murrell specialist Neurofibromatosis nurse in the West Midlands
Read More![](https://nervetumours.org.uk/images/made/images/common/carolyn-smyth_370x280_800_600_s_c1.png)
Statement by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
A Statement on Coronavirus by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
Read More![](https://nervetumours.org.uk/images/made/images/common/martin-sanchez-Tzoe6VCvQYg-unsplash_370x270_800_600_s_c1.png)
COVID - 19 News from Children’s Tumour Foundation our partners in the US
Covid - 19 News from Children's Tumour Foundation our partners in the US
Read More![](https://nervetumours.org.uk/images/made/images/common/NF_Nurses_370x280_800_600_s_c1.jpg)
Working For The NF Community and Helping to Protect and Save The NHS
Coronavirus is impacting the NHS heavily including our Specialist NF Nurses; help us support them, find out how
Read More![](https://nervetumours.org.uk/images/made/images/common/top-header-rotary-logo-and-name370x280_800_600_s_c1.png)
Leighton Linslade Rotary Club hosts Brains of Leighton Buzzard Quiz
Leighton Linslade Rotary Club hosts Quiz in aid of Neurofibromatosis type 2, find out more here
Read More