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 moreFilter News
The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
Find out more about the debate recently undertaken at The Royal Society here:
Read MoreAppearance Matters: Prof Diana Harcourt and Maia Thornton
Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:
Read MoreJane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
Read MoreSarah’s Story
Sarah has NF1 and works full time for the NHS check out her intriguing story here
Read MoreLaura’s Story
Read about Laura's experience of undergoing surgery to remove a tumour from her spine here:
Read MoreVisible Difference Equality Law Research: summary of findings
Find out more about the results here:
Read MoreThe Galloway Family and their “amazing” four year old Ruby
Have a read about the incredibly brave young Ruby Galloway (NF1) and check out their previous and future fundraiers.
Read More“Framing the face: History, Emotion, Transplantation” a blog from James Partridge
Find out more about the blog and what is concerns here:
Read MoreA Spooktacular Halloween day for NTUK
Find out more about the wonderful fundraising event here:
Read More