One thing we discussed was finding a way to establish a legacy for our regional showcases. We would love to develop a way to leave a more lasting impact on the areas we visit in particular for the patient and patient groups in the area. One idea could be to create an online forum for attendees of a showcase to stay in contact with each other once it was over in the hope that building connections within a regional rare disease community will be mutually beneficial. We’ll be exploring some of these ideas in the coming weeks and months, but if you have any suggestions please let us know!
Our showcases ensure that we refrain from taking a Cambridge/London-centric view of the UK rare disease community. There is incredible work going on right now in rare diseases in every corner of the UK. Our upcoming Manchester Rare Disease Showcase [hyperlink to event page] on 8th October is a testament to this and will highlight the strides being taken in the north west. It will also allow advocates from all across this region to network and create fresh and exciting new work.
We then moved on to discussing how we could increase the visibility of patient stories. At Findacure, our view is that the patient voice should be at the centre of what we do, and we try to ensure that every project we run is directly influenced by what our community wants. To do this we conduct surveys at our in-person events and on social media, as well as consulting with our Patient Engagement Committee which is comprised of rare disease advocates. We still think that we can do better, particularly with the addition of extra funding from the National Lottery Community Fund. As part of our dedication to community building, we are in the process of capturing patient stories, either through text or videos. When people are first introduced to Findacure, we would like them to leave with a feeling of hope that they too can achieve the incredible feats which other patient groups before them have done. We don’t want those who have just received a diagnosis of a rare disease to feel isolated. Instead they should know that they are part of an inclusive community which can support them. If you would like to share your experience of how Findacure or patient groups have helped you, please email [email protected]
When the strategy day concluded, we all left with a feeling of optimism. It is great to take some time away from the office and look at the big picture. To better understand what you have already achieved, and where you are going. We hope that there some exciting times on the horizon for the charity, but ultimately that means better support for the fantastic members of the rare disease community. The energy and commitment you display, and your support of Findacure, is a catalyst for everything we do.