My supply of mince pies is finally exhausted, which can only mean one thing – the new year is upon us. As we have returned to our desks at Findacure HQ this week, we have all been turning our thoughts to the year ahead. What will 2020 bring for Findacure and the rare disease community?
Patient group training
Obviously, 2020 should be a big year for our patient group empowerment programme. Those of you keeping an eye on our social media will know that we have our next webinar – Building an International Patient Registry – on the 15th of January, and we will be developing a much busier webinar programme over 2020.
Our workshops will remain at the heart of our work this year, helping patient groups access training but also connect with each other. Our next workshop – Leading a Rare Patient Group – is just around the corner, and is hopefully an example of our increasingly flexible workshop format. We want our events to be delivered in the best way for the topic, to cover new ideas, and to help patient groups learn from one another. Please do sign up while spaces remain. We’ll be examining a range of different topics in our 2020 workshops, with plans afoot to help patient groups find ways to reach a wider community and provide support for patient’s mental health. We’ll be toping this all off with expansion and improvement of our E-learning portal. This year you should be seeing more guides, with more video content, more interactivity, and more of your stories. Check out our recent Drug Repurposing guide for a taste of things to come.
Of course, our programme would not be complete with out the peer mentoring scheme – we are planning to launch a new round of recruitment for this very soon, so if you are interested in taking part, or know someone looking to form a new patient group keep your eyes peeled for more information.
Conference and Showcases
Our annual conference, Drug Repurposing for Rare Diseases, will be returning for its seventh year in February. We are moving the event to a new venue this year, giving us room for more delegates and exhibitors to ensure it will be our biggest event to date. We are currently finalising our programme but with talks confirmed on drug repurposing for FOP (fibrodysplasia ossificans progressiva, or stone man syndrome), and a drug being trialed for two different rare conditions at the same time, we already have an exciting day taking shape.
We will also be continuing our Showcase series in 2020. Our annual home town event, the Cambridge Rare Disease Showcase, will return in the summer, and we are in the early stages of planning for a large event in the South West of England – if you have suggestions for destinations or venues, please get in touch!
The rare disease world
With Rare Disease Day on the horizon the rare community are already gearing up to drive awareness with the general public. 2020 also sees the return of the European Conference on Rare Diseases (ECRD). The conference, organised by Eurordis, lands in a European city every two years to unite the patient advocates of Europe and wide research and pharmaceutical community. This year the event will be hosted in Stockholm, and there is still an opportunity for your patient group to present a poster at the event. Check out the plans for the event here, and we’ll hope to see a number of you there in May.
We’re excited to dive into our work in the new decade, and have got plenty of activities to get things started in the next few months. We’d love to hear your thoughts on the training and support you’d like to see from us this year, so if you have ideas, please don’t hesitate to get in touch. In the meantime, checkout our news and events pages to get an overview of our upcoming events and new activities, or sign up for one of our newsletters.
We’re looking forward to seeing you all in 2020!