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January saw our first patient group workshop, on the subject of ‘Fundraising on a Budget.’ There were 42 patient advocates who came to London, with talks focused on identifying different funding sources that patient groups can apply to. Our Chairman, Nick, was invited to join the advisory board of a new EU project focused on skeletal diseases, as part of a fantastic team of people researching the area. We were also listed as a Waggener’s Healthcare Influencer for January 2014.

In February, we started working with a research team of Masters Management Students at LSE, who have been invaluable to developing our strategy to best support patient groups. Co-founder, Tony, and Scientific Advisory Board Member, Oliver, published an article on collaborative drug development in the Journal for Clinical Studies, Vol 6, Issue 1.

We became an official partner of the RE(ACT) Community in March, a new online network for rare disease researchers. We also held our first Scientific Conference on the subject of Fundamental Diseases at Sidney Sussex College in Cambridge. It was attended by 36 representatives from research teams, pharmaceutical companies, biotechs and medical universities.

In April, we launched our first crowdfunding campaign to raise funds for our patient group training workshops, and to develop an online toolkit. We were amazed by the success of the campaign, which ultimately raised $29,200 from 184 donations across 15 different countries.

We held our second patient workshop in May, this time focused on applying for funding from the European Commission, and how patient groups can set up international research consortia. Of the 65 attendees, 88% agreed that the workshop increased their awareness of the role patient groups can play in research consortia, and 100% believed it increased their knowledge on applying to the European Commission. Nick and Tony attended the EU Conference on Rare Diseases and Orphan Products (ECRD) in Berlin.

June saw us gaining a lot of exposure in the local press enabling us to raise awareness of Findacure and of the fundamental diseases movement more generally. Founder and Chairman, Nick, and Project Manager, Flóra, were interviewed in two local papers, three radio shows and featured on two online blogs. Co-founder Tony Hall and a member of our Scientific Board, Oliver Timmis, gained us further publicity by writing an article for journal ‘Innovations in Pharmaceutical Technology’ about the need to ‘treasure’ rare diseases.

In July, we held our third patient group workshop, on the subject of the role patient groups can play in organising clinical trials for their neglected rare disease. The key aspects of clinical trial development covered planning, patient recruitment and retention, and how to work with industry. We also became a partner of INNORARE (Innovation and Research Acceleration for Rare Diseases), a project which aims to be a new resource adding and streamlining the resources offered by existing research infrastructures.

We were working very closely with our first intern throughout August; Rhys Dore, an Oxford University medical student was of instrumental help in aiding the development of our projects. Whilst here, he published an article on the importance of studying rare diseases for basic medical conditions and developing new treatment – ‘Understanding the Common through the Rare’.

September was a big month; we won a Patient Group Bursary Award for Sanofi, which we are using to pilot a peer-mentoring scheme to help small fundamental disease patient groups, and drive research into their neglected conditions. We also had our fourth and final workshop of the year about ‘How to Manage a Small Rare Disease Patient Group’. We had speakers from the Cystic Fibrosis Trust, the AKU Society and The CATS Foundation. Grace Smith, a trainer at the Directory of Social Change, gave a talk to explain the different legal structures patient groups can take and the associated responsibilities and risks.

In October, we launched our Social Innovation Programme with Cambridge Hubs. Through this, six volunteers helped to develop a plan to make our training workshops financially sustainable. The London Business School Impact Consulting group also began a research project to help us develop our long-term strategy. Nick spoke about Findacure at the Evolution Summit in Monaco, and Flóra attended Genetic Alliance UK’s launch event for the Patient Charter on specialised commissioning by the NHS.

In November, our second full time member of staff, Louisa Ackermann, started as our Fundraising & Communications Officer. She attended the AMRC annual conference and AGM, which she wrote about for our new blog. Founder Nick won ‘Inspirational Stakeholder of the Year’ at the 2014 ROAR Awards (Rare & Orphan Advocacy & Research Awards). In addition, Findacure was nominated for ‘Outstanding Patient Advocacy.’ Too, Nick and Flóra went to a reception at the House of Lords for a dinner in honour of the winners of the Sanofi Prize. We also held a dinner with Dame Stephanie Shirley, a leading healthcare philanthropist in the UK to discuss plans and strategies for developing Findacure’s drug repositioning programme.

We continued rubbing shoulders with nobility through December, with Flóra, Nick and Oliver attending a reception at the House of Lords once again; this time to meet the Countess of Mar to find out how we could support her organisation, Forward-ME. We finished off the year by going as a team to give blood.

2014 has been incredibly busy, and we’ve grown and achieved a lot through the year. Merry Christmas to our Findacure family, and a Happy New Year to all!

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