Helpline 07939 046 030

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

Filter News

Filter by Date

Nerve Tumours UK Lottery

Read how the NTUK Lottery helps make a difference to the NF Community

Read More

Manchester Comedy Night

Manchester's Frog & Bucket Comedy Club hosted the 2nd date on the NTUK 2022 comedy circuit

Read More

Medical Photography of dermatological conditions - research

Research study: Patient perceptions of medical photography of dermatological conditions

Read More


Read the My Neuro Survey findings from the Neurological Alliance & sign the petition for a Neuro Taskforce to deliver change

Read More

Austin’s NF1 story

Austin's mother, Katie, describes how local biker clubs have helped to support Austin since his NF1 diagnosis

Read More

NTUK Comedy Circuit 2022

Three more dates for your diary: Manchester 14/6, Newcastle 12/7, Glasgow 14/7. Altogether now: "Happy birthday NTUK!"

Read More

RideLondon-Essex 2022

Thank you to our RideLondon-Essex 2022 cyclists! Click here for some great photos from the day

Read More

Pat’s Triathlon Challenge

Pat is taking on a 3 day triathlon style challenge to raise awareness & funds for Neurofibromatosis research & support

Read More

World Neurofibromatosis Type 2 Day and 40 Years of NTUK

A celebration and call out to get involved, ask questions and join the community with Emily Owen

Read More