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In this week’s blog, we are delighted to look back on the jam-packed year of 2018. Click the links to find out more about each of our highlights, including video recordings of talks at all of our events!


Winners of our 2017 essay competition announced
2017 saw another fantastic set of entries to our Student Voice essay competition. The three winning essays were announced in January 2018 – why not have a read via our competition webpage?!

2018 peer mentoring programme off to a great start
Our third peer mentoring programme got off to a fantastic start, launching with 20 amazing pairs. Each patient group has achieved a fantastic amount through the year – watch this space for more news as the programme comes to a close!


Rare Disease Day conference

Despite a snow storm causing serious travel disruption across the UK, over 100 delegates made their way through the doors at our annual Drug Repurposing for Rare Diseases Conference. We learned about a range of patient, clinician and pharma-led repurposing projects. All the talks are still available to watch on our blog!

Flying the flag at Cambridge 105
In the run-up to Rare Disease Day, we were delighted to be chosen as Cambridge 105 Radio’s Charity of the Month. Libbie and Katie headed into the studio with guest speakers Nick Sireau, Becki Nunn and Shelley Simmonds to raise awareness of rare diseases.


Developing online communications workshop
Good online communications are very important when it comes to rare disease patient groups. We held a workshop to help our community improve their skills and confidence, with excellent talks on basic tools and tips, believing in your brand, managing online communities, and GDPR. All of the talks are still available to view on our blog.

Great success at the Cambridge Half Marathon
We were over the moon to have seven runners in the Cambridge Half Marathon, raising over £3,000 between them! Huge thanks to the team for their support.


2017 impact report published
After spending a long time reviewing and reminiscing on 2017, our impact report was published! Check it out for a colourful low-down of what we got up to that year.


Team Findacure hits up ECRD
Networking is key when it comes to building connections and collaborating. With this in mind, the team headed to the European Congress on Rare Diseases 2018. Here they met individuals working across the rare disease spectrum and learned a lot from the sessions. Find out more in our blog!

Katie takes Cambridgeshire by storm
May was a top month for fundraising in our local community. Katie gave a talk at the Sandy Rotary Club, attended a local Masonic Charitable Fund presentation evening, and ran a solo street collection which raised £125!


Peer mentoring summer meet-up
To encourage the sharing of knowledge between pairs on our peer mentoring programme, we held a half-way meet-up in June. Around 25 people attended and gave short 5-minute talks about their progress. We also had a fantastic training session on leadership.

Fundraise for your cause
Being able to raise funds is critical for any rare disease patient group. While many begin as volunteer-led organisations – often by parents and patients themselves – as these groups grow, they have to ensure they have the right resources in place. With this in mind, we held our second workshop of 2018 on the topic of fundraising. Talks from the day are still available on our blog.


Meet our summer intern, Ike
No charity is complete without great volunteers. We would like to say a huge thank you to Ike who joined us for three weeks over her summer break from university to help develop our online portal. She did a fantastic job and gelled with the team really well!

Tesco were Bags of Help
Funded by the sale of 5p carrier bags, the Tesco Bags of Help scheme is designed to support the work of local charities. We were one of three charities chosen to benefit in Cambridge stores in July and August. Based on the votes of customers, we were delighted to have won the top prize of £4,000!


Cambridge Showcase
Good online Cambridge is one of the UK’s leading cities for scientific and medical research. It also happens to be the hometown of ourselves at Findacure. Which is why, every year, we hold one of our Rare Disease Showcases in the heart of the city. Find out how the 2018 event went down in our blog.

Charlotte did us proud
August saw Charlotte Proud – one of our top Findacure supporters – take on the Great Scottish Aquathlon! She raised an incredible £600 for our projects. Well done and thank you, Charlotte! Find out more about her story here.

2018 #DareForRare skydive
Three brilliant Findacure supporters took to the skies for the 2018 round of our annual skydive! They raised an awesome £1,500 for the rare disease community. Thank you to all who took part and donated.


Launch of our new website
After a lot of hard work, sweat and tears, our new website was finally launched in September! With a completely new look and feel (and events page!), we were incredibly proud of how it turned out. Huge thanks to Tara for her help developing it!

Social research workshop
Social research is a powerful tool when it comes to the work of rare disease patient groups. To explore this avenue further and learn how to actually go about it, Findacure teamed up with our friends and market research experts, Kudos Health Research, to deliver a day-long workshop. Find out how it went via our blog.


Heading north of the English border…
Our second Showcase of the year saw us going north of the English/Scottish border to Glasgow! The city welcomed us with open arms and almost 80 people joined us to hear about the work taking place in Scotland’s thriving rare disease community. Find out how it went, and view recordings of all the talks, in our blog.

… and across Europe
Few people know that Findacure is part of an international research consortium for the rare disease MCDS, or metaphyseal chondrodysplasia type Schmid. Rick and Libbie headed to Bologna for the first annual meeting of all the partners. It was great to learn about the next research stages and meet the rest of the team!


Translational research workshop
Translational research may sound like a bit of a buzzword, but it is, ultimately, what all patient groups are working towards. For that reason, we worked with LifeArc to deliver a workshop on the topic. We heard fantastic talks that introduced us to translational research, the role patient groups can play in it, and how you can obtain funding for it. Catch all the talks in our past blog here.

Meet our volunteer, Shimon
We would like to say a huge thank you to the latest volunteer to join the Findacure cause, Shimon! Shimon has joined us in the office for a couple of hours every week, enabling us to expand our capacity and promote our projects and events. Find out about him in his blog.


Selling crafts at the Mill Road Winter Fair
We started December in the most festive way possible – at Cambridge’s Mill Road Winter Fair! Selling crafty products made by friends and family, we raised an awesome £324. Huge thanks to everyone who donated goods and of course stopped by our stand to buy them.

Santa Cures is coming to town!
Ending 2018 on a fantastic note, Team Findacure headed to the Victoria Park Santa Run to fundraise for us. Clad in fetching Santa costumes, the team made it around the 10k course and raised over £1,100 for our projects. Buckets of thanks to everyone who ran and dontated!


Wow, what a jam-packed year it was! We cannot thank everyone who helped to make it such a special and productive 12 months enough – you are all amazing!

We are incredibly excited to get 2019 underway with some more projects and events… watch this space.

2018 in review

by Libbie Read time to read: 7 min