Family Workshop_meme_FinalV1

Book now for our Families Workshop 2019

Get your tickets for our Families Workshop in Birmigham on Sat 23rd Nov 2019: Get Tickets More information on the workshop weekend can be found here: More info  

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Mother and daughter Flying High for Ring20

Our latest blog from 16 year old Sophie and mum Jacqueline who took on a skydive for Ring20 and raised £1,000

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plrh cambridge


As we celebrate #VolunteersWeek2019 and reach out to thank all of our volunteers, without who our patient support group wouldn't exist, our co-founder and secretary reflects on her volunteering experi

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#MentalHealthAwareness week

In this week's blog Torie Robinson from Epilepsy Sparks talks openly about her experiences of epilepsy and mental health issues which can affect the whole family

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The EpiCARE team

4th ERN Conference, Brussels 2018

Read how Allison got on at the 4th European Reference Network (ERN) conference in Brussels, as part of the EpiCARE team.

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Photo: Ben Queenborough for Prudential RideLondon

NEW! Challenge Events

We are excited to have teamed up with Genetics Disorders UK to offer you some fantastic challenge events in 2019. From the Prudential Ride London, to the Great North Swim and Great North Run. Limit

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Ring20 Newsletter Aug 2018

The latest BUMPER issue of our newsletter, with highlights from our r(20) Gala Ball and family picnic, update on Research and of course our Research Fund Campaign and much, much more...  News

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Patient Perspectives on Rare Disease Mar ’18

Read Dawn Gray's blog post about her recent day out representing r(20) together with Jackie Aley (this was Jackie's first event attendance for us, and hopefully wont be her last??) Read Dawn's blog

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r(20) Families Conference DVD

Now available to order...   Order your r(20) Families Conference DVD today and get a FREE copy to hand to your paediatrician/neurologist with every order (1 per family)! More details her

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Checkout Daan’s personal story

We've added a new personal story - checkout Daan's personal story of how having r(20) syndrome led to a new invention here.

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