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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

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