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/Shine-a-Light_1600x900px_800_600_s_c1.jpg)
Shine a Light on Neurofibromatosis
World Neurofibromatosis Awareness Day - May 17th. Help us raise £ 26,500 for 26,500 people in the UK who have nerve tumours.
Read More![](https://nervetumours.org.uk/images/made/images/common/jem-nd-richPage-Preview-800-x-500-px_800_600_s_c1.png)
Jem Musselwhite and Rich White are fundraising by walking the Pilgrims’ Way
Jem and Rich are walking more than 100 miles to raise money for Nerve Tumours UK. Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Rachel-Page-Preview-800-x-500-px_800_600_s_c1.png)
Meet Rachael
Rachael Reynolds is a 43-year-old mother of four, living in Huddersfield. She recently appeared in the Channel 5 programme,
Read More![](https://nervetumours.org.uk/images/made/images/common/Beijing-MarathonPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Our Two Marathon Runners from China
Meet our two runners from China who like to partake in marathons across the globe.
Read More![](https://nervetumours.org.uk/images/made/images/common/Andrew-Leak-MarathonPage-Preview-800-x-500-px_800_600_s_c1.png)
Andrew Leak is set to Complete 10 London Marathons!
Andrew Leak is about to complete his mission of running 10 London Marathon's! Find his press release here
Read More![](https://nervetumours.org.uk/images/made/images/common/Gemma-Barnes-Page-Preview-800-x-500-px_800_600_s_c1.png)
Meet Gemma
Gemma Barnish has NF2 and has recently gotten married, find out more about her intriguing life here:
Read More![](https://nervetumours.org.uk/images/made/images/common/KIDZ-ADULTZPage-Preview-800-x-500-px_800_600_s_c1.png)
Kidz to Adultz Exhibitions
Kidz to Adultz offer a number of free exhibitions across the year to offer adivce and information on living with a disability
Read More![](https://nervetumours.org.uk/images/made/images/common/CARPage-Preview-800-x-500-px_800_600_s_c1.png)
Centre for Appearance Research at UWE want you to help test online support for people with Nerve Tumours
Centre for Appearance Research are looking for people with Nerve Tumours to test their new online support
Read More![](https://nervetumours.org.uk/images/made/images/common/support-specialPage-Preview-800-x-500-px_800_600_s_c1.png)
Support Specialists Challenges and Ambitions
Read more on both Rachel and Carolyn's views on their ambitions and challenges faced as Support Specialists
Read More