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
World NF 2 Day May 22nd 2020
See what we're up to for this World Neurofibromatosis Type 2 day
Read MoreStatement by Mary Thomas Clinical Neurofibromatosis Nurse UK
A statement on coronavirus by Mary Thomas clinical nurse at Guy's and St Thomas' NHS Foundation Trust
Read MoreShine a Light 2020 Success!
Check out some amazing blue buildings that took part in our Shine a Light On Neurofibromatosis 2020 campaign
Read MoreSarah’s Story as told by her Father Clemence
Read more about Sarah's story and her Shining a Light on NF from home for World NF Awareness Day!
Read MoreStatement by Helen Tomkins our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Helen Tomkins specialist Neurofibromatosis nurse in Devon & Cornwall
Read MoreCourtney’s Story
Read more about Courtney's NF Story and how she overcomes her difficulties
Read MoreNo Laughing Matter
Tom is a former journalist, here he describes his journey from music journalism to comedy, & what his NF2 has to do with it
Read MoreShine A Light on Neurofibromatosis 2020
Find out what we're up to for our Shine A Light campaign this year!
Read More