We’re really keen to keep all of our usual support for patient groups going at Findacure, as well as trying to provide some help and pointers to help groups get through the current Covid-19 crisis. To know what the challenges are though, we must keep in touch with our community, and get your thoughts on our work and longer-term plans. That is why in the last few weeks we have held a focus group with rare disease patient groups, begun our RareChat project (more information here), and held a meeting with our Patient Engagement Committee.

First and foremost, the discussions we held have helped to highlight the worries and struggles for rare disease patient groups at the current time. A lack of clarity in government advice, rare patients unsure how covid-19 could affect them, and a subsequent increased demand for advice and guidance are common themes across the groups we have spoken too. Alongside this though, fundraising is a significant worry. Many patient groups rely almost exclusively on community fundraising, donations, and personal funds to deliver their work, and lock down has almost instantaneously reduced or halted their income.

In response to this hugely challenging environment we have tried to provide some basic resources to help. A few weeks ago we released our Covid-19 emergency fundraising document – this contains a whole range of funding opportunities that could help your organisation during this unprecedented time, as well as some basic guidance on the stance of some of the bigger funders out there. This week we have followed this up with our Online Workshop on fundraising (more resources coming soon) and a new handout that provides ideas on how you can continue some community fundraising in the lockdown world. We hope that these resources will provide some ideas to help you tackle lock down. If in doubt about whether funding opportunities apply to you, always think about how the work you do is helping patients during lockdown –  if you can frame your work in the context of Covid-19, you may be able access the funds you need to support your community through this time.

Of course, we are not solely focused on covid-19 – in fact we are keen to try and keep our work moving forward as normal wherever possible. Our recent Patient Engagement Committee meeting was a great way to look at some of our long-term objectives and plans to help the rare disease patient group community. The meeting was an amazing opportunity for us to test some of our ideas, and really focus on how we can develop new training soon. We spent a lot of time thinking about engaging younger people, and a wider diversity of people in the rare disease community, as well as the challenges of mental health. Expect us to be looking at these topics in much more detail in the future.

For now, Findacure is on track, and focused on providing as much support to the rare disease community as we can through these strange times. If you have ideas of what you would like us to cover, or ways in which we can help, please get in touch. We will do our best to help.