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 →
crdn feature

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 →
Richard T Smith

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 →
Sparky Halloween Party

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 →
Sullivan family

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 →
rare revolution autumn 17

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 →

Cambridge International Rare Disease Summit 2016

Thought provoking day of speakers at Robinson college, Cambridge#crdn2016. The introduction from new chair of CRDN Alistair Kent OBE was followed by a panel of 'Powerful Voices' where patient organ Continue Reading →
Midlands Rare Disease Showcase Birmingham Children's Hospital

Midlands Rare Disease Showcase

Findacure and Birmingham Children’s Hospital are pleased to announce The Midlands Rare Disease Showcase on 22nd October. This day long event will celebrate the diverse progress being made withi Continue Reading →
BIG Lottery logo

Fantastic Funding from BIG Lottery Fund!

We are excited to announce that we have secured funding of £9,993 from BIG Lottery Fund. We will use this funding to organise an inaugural conference dedicated to r(20) syndrome, bringing togethe Continue Reading →

Royal Parks Half Marathon Oct 2015

On Sunday October 11th 2016, Allison is taking on a half marathon around London raising funds for Ring20 Research and Support UK. You can sponsor Allison here: https://mydonate.bt.com/events/r20/21 Continue Reading →