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It’s been mega busy lately at Findacure HQ, so busy in fact that we completely missed the halfway point of 2017! However, as things begin to slow down (who am I kidding?) and the days start to get shorter (winter is coming), Mary Rose has taken some time out to reflect on our achievements so far this year. In this week’s blog, we’ll be doing our very own #throwback to Findacure’s top five moments of 2017. We hope you enjoy the memories!


1. Drug Repurposing for Rare Diseases Scientific Conference

February saw Findacure host its most ambitious conference to date, when over 120 delegates joined us to hear the latest developments in the field of drug repurposing on Rare Disease Day. We had the pleasure of hearing from some of the top experts in the field, as well as the all-important patient story. The day’s atmosphere was friendly and full of hope, with all stakeholders in the community coming together, eager to collaborate and encourage the change that rare disease patients and their families desperately need. The conference also gave us the opportunity to congratulate the winners of our 2016 Student Voice essay competition, recognising the achievements of our top three finalists in front of our engaged audience.



PG2. Implementing a shiny new workshop format

2017 saw Findacure enter its fourth year of patient empowerment workshops, and we decided to shake things up a bit by introducing a new formula for the day and improve the training we provide. The key feedback we received from our beneficiaries in 2016 was that they wanted more time to network with other rare disease advocates, and the opportunity to take part in group activities and discussions. Well, ask and you shall receive – we implemented both of these elements into our first workshop of the year, “An introduction to Community Fundraising”. All in all, we were able to expand our previous half day event, into a jam-packed full day of exciting learning, including four expert talks on the different areas of community fundraising, lunch (!), a group activity guiding delegates through planning their own fundraising activity, and two dedicated networking sessions. We implemented this again in June for our collaborative “A-Z to Setting up a Patient Group” workshop with Genetic Alliance UK and plan to continue this throughout the year. Both of our previous workshops went really well, and we are so pleased with the feedback we’ve received so far.


3. The Drug Repurposing Open Call

February’s Rare Disease Day also saw the launch of our ‘Rare Repurposing Open Call’. The purpose of the call was to search for existing drug repurposing ideas for rare diseases that lack the resources or funding to run a full clinical trial (if this doesn’t make much sense to you, read up on our drug repurposing project here!). Researchers, clinicians, patient groups and pharma were all welcome to submit their projects. We were blown away by the 30+ proposals we received, and are hugely grateful to everybody who got involved and helped us to promote it. Now we’ve got the hard task of filtering through the submissions and discussing the best way to advance them.


CHM4. Fabulous Findacure Fundraisers

It’s only July and already our fantastic fundraising team have raised over £10,000 for Findacure! We’ve had firewalkershalf marathonersfull(!) marathonerscyclistsmountain bikersmountain climbers and cake bakers, all raising money for our cause – and that’s not even including the thousands of stampswe’ve had sent in. There have been some amazing achievements and we are truly grateful for all of our fundraisers support – we couldn’t continue our work without their help. We still have another two fundraising events planned, our Dare for Rare Skydive and the Royal Parks Half Marathon, so if you’d like to join our team please get in touch!

5. Findacure on Tour

In May, Findacure embarked on an exciting adventure – road tripping down from Cambridge to Cardiff in the name of The Cardiff Rare Disease Showcase. This was an important moment for us, as we tested out the second in our ‘showcase’ event series in an area we’d never been before. Despite some initial concerns, the evening turned out to be a great success. 35 delegates from Wales’ (and the wider UK) rare disease community joined us to hear about the inspirational projects taking place in the nearby area, and to network with other like minded individuals who want to drive progress in rare diseases. Our next showcase is taking place in Cambridge, with another planned in Newcastle later in the year – make sure not to miss out!


All in all, we’ve had a great year so far and can’t wait to see what the rest of 2017 brings!

So far in 2017…

by Mary Rose Roberts time to read: 4 min