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As 2017 fast approaches, we at Findacure have been reflecting on how 2016 has been yet another fantastic year for us and our projects. We’ve hand-picked our greatest moments and achievements, and have put together the following timeline. It sure has been jam-packed!

8th January – Launch meeting for our Rare Disease Drug Repurposing Social Impact Bond (RDDR SIB)
We kicked off the development of the RDDR SIB – a collaborative project that aims to deliver treatments to rare disease patients much faster and cheaper than conventional drug discovery. This is ideal in the underfunded rare disease sector!

29th January – ‘Navigating the Highly Specialised Technologies’ workshop
Our first workshop of the year helped rare disease patient groups and advocates to understand how medicines are approved in the UK, featuring talks from NICE representatives.

16th February – ‘Drug Repurposing Explained’ webinar
Our first ever webinar introduced participants to what drug repurposing is, our own project, and its huge potential for treating rare diseases.

29th February – ‘Drug Repurposing for Rare Diseases’ conference
Our third annual conference, held in celebration of Rare Disease Day, brought together a diverse audience to learn about drug repurposing. With talks ranging from ‘Identifying repurposing opportunities’ to ‘Patient group led repurposing research’, there was a lot to take home. Our next conference will be held on Tuesday 28th February 2017.

29th February – Winning 2015 essay published
The winning essay of our 2015 ‘Student Voice’ essay competition, written by Roberta Garau, was published in the Orphanet Journal of Rare Diseases. Another three of our essay submissions were selected to be published in the BMC’s On Biology blog.

5th March – Final ‘Cross Your Own Oceans’ day
The second year of our ‘Cross Your Own Oceans’ project brought teenage rare disease patients together at the London Eye and London Aquarium. They learned how to overcome challenges they might face with their rare disease, made good friendships, and importantly realised they are not alone in their journey.

13th March – Silverstone Half Marathon
Four Findacure supporters ran the Silverstone Half Marathon, raising over £1,500!

15th March – Orphan Drugs & Rare Diseases Global Congress 2016
Rick, our Head of Research, and Flóra, our Executive Director, separately presented at this event. What a great Findacure presence!

17th March – Crowdfunding with the Children’s Hyperinsulinism Charity
We ran a joint crowdfunding campaign with the newly-formed Children’s Hyperinsulinism Charity. With a range of delightful perks on offer, we raised over £8,000 for the two charities!

5th April – Wolfram Syndrome clinic visit
Wolfram Syndrome is one of the three rare diseases already selected for our drug repurposing project. Rick visited the Wolfram Syndrome clinic in Birmingham and ran a patient focus group to assess the need for our project.

14th April – aPodd crowdfunding filming
We filmed and edited the crowdfunding campaign video for aPodd, a charity researching rare childhood cancers.

22nd April – ‘Sustainable Development for Rare Disease Charities’ workshop
The second workshop of the year introduced patient groups to ideas and methods for strategic planning, budgeting, and recruiting staff and volunteers.

19th May – ‘Rare Disease Collaborations’ networking event
Our Cambridge networking evening enabled a range of individuals interested in rare diseases to meet and learn about each other. Five minute lightning talks, focused on successful collaborations in the rare disease sector, interspersed the networking.

25th May – Canada Talks Pharma
Flóra presented on the topic of patient engagement in research at the Canada Talks Pharma, Montreal.

27th May – European Conference on Rare Diseases
Rick chaired a session at the European Conference on Rare Diseases in Edinburgh.

16th June – Welcome Mary Rose!
We welcomed Mary Rose Roberts, our new Events Officer, as the fourth member of our team.

24th June – ‘How Rare Disease Patient Groups Can Work With Researchers’ workshop
The aims of our third workshop were to improve the confidence of patient groups and advocates when working with researchers, and to share best practice when doing so.

25th June – Sky dive
Six Findacure supporters took part in a sky dive at the North London Sky Diving Centre. Together with another three sky divers in September, they raised over £3,200!

1st July – Completion of health economic modelling for three rare diseases
Alongside our partners, we completed the health economic modelling for Congenital Hyperinsulinism, Wolfram Syndrome and Friedreich’s Ataxia. The purpose was to calculate the current cost of each disease to the NHS, and potential savings a repurposed drug could make. Results can be found on our drug repurposing webpage.

23rd August – NHS proof-of-concept meeting
We met with senior members of the NHS to present the proof of concept for the drug repurposing social impact bond.

16th September – 2016-2017 peer mentoring launch
The launch event for our 2016-2017 peer mentoring scheme saw many of our 18 pairs meet for the first time. The programme pairs small or struggling patient groups with more experienced ones or experts in the field for tailored advice and support.

16th September – ‘Patient Registries’ workshop
Our final workshop of the year focussed on the value of patient registries and how patient groups can best keep one.

19th September – New online resources portal
In response to feedback from beneficiaries, we launched a brand new online resources portal for rare disease patient groups. The new portal is easier to use, more structured, and contains updated information. We will be adding lots more courses throughout 2017, so watch this space!

23rd September – Gala dinner
We had a fantastic night at our first ever fundraising dinner in Cambridge, in celebration of our fourth birthday. We were honoured that Jade Etherington, Britain’s most successful winter Paralympian, came along to speak about her experiences skiing with her rare disease Axenfeld Syndrome.

3rd October – ‘Student Voice’ essay competition launch
Our third essay competition for biology and medical students ran from early-October to mid-November. The aim is to engage doctors- and researchers-to-be in rare diseases. Results will be announced in the new year.

7th October – First Empowerment Advisory Committee
The Empowerment Advisory Committee was put together to help us best support our beneficiaries.

9th October – Royal Parks Half Marathon
The 13 mile Royal Parks course was completed by three Findacure supporters, who raised over £2,500!

11th October – ‘Health Literacy Explained’ webinar
Health literacy is important to consider when patient groups communicate with their patients. We held a webinar to highlight this and demonstrate best practice.

22nd October – Midlands Rare Disease Showcase
Organised by ourselves and Birmingham Children’s Hospital, the Midlands Rare Disease Showcase welcomed over 80 rare disease stakeholders to network and learn about the latest progress in the rare disease sector.

7th November – Findacure’s fourth birthday and pub quiz
Happy birthday Findacure! We celebrated by holding a pub quiz at The Six Bells, Cambridge.

16th November – World Orphan Drug Congress 2016
Flóra held a roundtable, chaired a session, and presented at the World Orphan Drug Congress.

1st December – ’12 Donations of Christmas’ appeal launch
To ensure 2017 is even more successful than 2016, we ran a Christmas fundraising appeal for all our projects. The appeal is still open and any donations are hugely appreciated.

13th December – ‘Web Development Explained’ webinar
Websites for patient groups are a vital point of contact and information for patients. However, they can be difficult to create well on a tight budget. Our webinar gave some top tips!

We would like to thank everybody who has been part of such a fantastic year, and to wish you all a very merry Christmas and a happy new year. Please note that the Findacure office will be closed from Friday 23rd December until Tuesday 3rd January.

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Reminiscing on a brilliant year

by Libbie Read time to read: 5 min