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Mother and Daughter Flying High for Ring20

[caption id="attachment_2059" align="alignleft" width="190"] Sophie[/caption] There might be many things on a young girls wish-list as she approaches her sixteenth birthday, but what Jacqueline Bal Continue Reading →
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A week in the life…

Many people ask me why I volunteer and why I do what I do. If I reflect on my answer to them it’s primarily because I enjoy my voluntary work and find it incredibly rewarding; there’s a lot of job Continue Reading →
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Mental Health Awareness Week

When you meet Torie the first thing you notice is her sheer radiance and beaming smile. You cannot help but feel uplifted by her positive energy, but like many people who live with epilepsy, her smile Continue Reading →
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4th ERN conference, Brussels 21-22 Nov 2018

[gallery ids="1905,1909"] As part of my role as a European patient advocate for rare epilepsies, last month I was honoured to be invited to attend the 4th European Reference Networks Conference alo Continue Reading →
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Patient Perspectives on Rare Disease

Glad Jackie and I made it to the The Rare Disease Day Event at Birmingham Children's Hospital on 1st March 2018. Gosh it was cold! A great day which got cut short due to the weather. I met Continue Reading →
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CRDN Summit 2017

On 23rd Oct, Dawn and Allison had the fantastic opportunity to attend the Cambridge Rare Disease Network (CRDN) Summit 2017 at Robinson College, Cambridge. On arrival we handed over our patient jou Continue Reading →
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Richard T Smith – magician

Guinness World Record Holder for 'The Longest Magic Show', Richard T Smith, entertained our families during our gala dinner at our families conference: [gallery ids="1635,1634,1633,1628,1631,1630"] Continue Reading →
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Jessica’s Sparky Halloween Party

JESSICA’S RING20 JOURNEY OUR FIRST FUNDRAISING EVENT HAS BEEN A HUGE SUCCESS! With the support of family and friends, we’re excited to update that Jessica’s Sparky Halloween Party was a hu Continue Reading →
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Fantastic Fundraising Initiative!

One of our r(20) families based in Scotland, Chris and Claire Sullivan were inspired following our families conference to instigate their very own year long fundraising initiative, with an target of Continue Reading →
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Rare Revolution Autumn Issue

The bumper Rare Science edition of Rare Revolution magazine is now live and includes a special article on our r(20)conference. Use the link below to read your copy online: Rare revolution: Rare Sc Continue Reading →