Virtual Annual Rare Disease Patient Network meeting 2020

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Join Wales Gene Park for its sixth annual Rare Disease Patient Network meeting – this year’s event will take place exclusively online. Register free.

Date And Time
Thu, December 10, 2020

10:00 AM – 2:30 PM GMT

About this Event

We look forward to welcoming you to our 6th annual meeting, bringing members of the Rare Disease Patient Network* together.

Genetic Alliance UK will be launching it’s Quinquennial Patient Experience Report, bringing together the experiences of over 1000 members of our community affected by rare and genetic conditions.

Other invited speakers will discuss how genomics is changing healthcare and share experiences of living with a rare disease during COVID 19.

We will also be joined by Phenotypica and Dr Samuel Chawner who will be hosting an online workshop focused on highlighting the experiences of individuals with genetic conditions through creative engagement.

This virtual event is FREE for anyone within the rare disease community; patients, families, researchers, health professionals and we welcome non-network members to come along to find out more.

Once registered, Zoom details for joining the event will be emailed out to all attendees prior to 10 December along with the full programme. There will also be a lunch break after the morning presentations and ahead of the workshop in the afternoon.

If you have any questions about the event, please contact, Emma Hughes:

*Please note you do not have to be a member of the network to attend this event, but you are very welcome to join.

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