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/Childhood_Neurological_Conditions_Survey_Website_Header_370x280_800_600_s_c1.png)
Childhood Neurological Conditions Survey Part 2
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/HCTN0411_370x280_800_600_s_c1.jpg)
Graham’s Super Nine Shines A Light on NF
Graham's 7 year old great-nephew Nathan is his inspiration for his epic challenges to fundraise for NTUK
Read More![](https://nervetumours.org.uk/images/made/images/common/Siobhan_Harding-Lester_370x280_800_600_s_c1.jpg)
Meet Siobhan, our new Specialist Advisor for Northern Ireland
Meet Siobhan from Northern Ireland, our newest Specialist Advisor
Read More![](https://nervetumours.org.uk/images/made/images/common/Poppy_1_370x280_800_600_s_c1.jpg)
Poppy’s NF1 story
Poppy describes growing up with NF1 and fundraising for future research & treatment
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_4646_370x280_800_600_s_c1.jpg)
Meeting Alpha FX
NTUK Head Office visited Alpha FX to give a presentation on our work & how their support & donations help the NF Community
Read More![](https://nervetumours.org.uk/images/made/images/common/NA_logo_370x280_800_600_s_c1.jpg)
Nerve Tumours UK joins the Neurological Alliance
A coalition of over 70 organisations working together to transform quality of life for people with neurological conditions.
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_4791_370x280_800_600_s_c1.jpg)
Nerve Tumours UK Conference 2021
The first meeting since 2019 with our Specialist NF Advisors & Nurses, Head Office & Members of the Board of Trustees
Read More![](https://nervetumours.org.uk/images/made/images/common/Wing_Walk_Ailsa_photo_on_wing_waving_370x280_800_600_s_c1.jpg)
Tricia’s Wingwalk fundraiser
Tricia describes her wingwalk experience in celebration of her 75th birthday and in memory of her daughter Sarah, who had NF1
Read More