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A big part of what we are looking to do at Findacure is to build an all-encompassing rare disease community. We want to encourage all the different disease specific patient organisations to recognise the challenges and experiences they share, and to use this commonality to support each other, and hopefully raise the collective profile of rare disease.

Clearly delivering on this mission during a global pandemic, with much of the population sitting indoors is a bit of a challenge, but we think the need remains the same. So, after chatting to an amazingly helpful group of rare disease advocates about what Findacure should be doing in the current situation back in March, we decided we needed to provide a way for rare patient groups to talk and meet each other during lockdown. So, our new project, RareChat, was born.

We understand that RareChat is not going to single handedly unite all rare disease patient groups – it is a small-scale project, designed to allow a group of up to ten patient representatives to come together and share perspectives. Any patient group member can sign up for the free hour chat, where we have a simple topic and a Findacure moderator to focus discussion. The aim is to be informal, to share experiences, ideas, and resources, and to build connections between patient organisations.

So far, we have held three sessions, with discussions focussing on mental health in rare disease, community fundraising during lockdown, and how to find and make the most of volunteers. So far, the sessions have been really positive. It has allowed a networking opportunity that many have been missing as a result of not attending face-to-face events.

The sessions have allowed groups to share tips and information about platforms they are using, funding opportunities and contacts for volunteer support. The format offers a relaxed approach where organisations can connect whilst also sharing details of the struggles they are facing. Rare Chat attendees have explained how COVID-19 has impacted the delivery of their services, the need for volunteers vs the limited time to train people and the need for funding to support volunteer led organisations to develop paid staff roles. We have spoken about burn out, virtual event ideas, how to prioritise workloads and networking in a virtual world.

Findacure aims to support groups in their development, so they don’t have to “re-invent the wheel”, we offer a space where patient groups can share information and resources. RareChat reflects this ethos perfectly as groups are enabled to share resources such as upcoming funding and policy templates whilst discussing hurdles they have overcome within the day to day running of their organisations.

We’ve really enjoyed running the RareChat sessions so far. It has been a great chance for the Findacure team to stay in touch with the patient group community, and I think we have all learnt something ourselves from the sessions. We are keen to get your thoughts on the project though:

• Is RareChat helpful?
• How will the easing of lockdown effect the time you have available for these types of discussions, and your need for them?
• Would online community chats be useful beyond lockdown?
• What topics really need discussing at these types of events?
• Are you just fed up of zoom calls after three solid months of virtual meetings?

We’d really love to hear your thoughts and ideas on any of these questions, so please do make comments below, or email us directly at [email protected] Either way, we hope to see some of you at our next RareChat in early July.

Community contact- RareChats and Zoom rooms

by Philippa Norman time to read: 3 min