We produce a weekly blog to share what we’ve been up to, stories from the rare disease world, interesting info on our projects, and more.
Every week we put our fingertips to keyboards to bring you, our community, stories of what we’ve been up to, things we’ve found interesting, and updates from our projects. Released every Friday, our blog is also regularly written by guests who openly share their experiences. We hope you enjoy reading our little instalments!
Every two years EURORDIS (Rare Diseases Europe) hold a large international conference focused on rare disease patient advocacy called The European Conference on Rare Diseases (ECRD for short). It is an event we have all being building up to for months, as it brings...read more
From the 4th to the 6th of May we ran a three day online workshop focusing on the theme of ‘setting yourself up for fundraising success,’ with the ultimate aim of providing expertise in how to transition patient group funding away from community fundraising to applying to grants and foundations and accessing corporate funding.read more
Today's guest blg is written by Polly Moyer, Co-founder of the Action for Mal de Debarquement Syndrome UK facebook page and founder of the Familial MdDS facebook group. Here Polly gives a perspective on the pandemic from someone with Mal de Debarquement Syndrome...read more
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...read more
Trustees are essential for any charity – they are, after all, the source of governance and oversight for your organisation: you can’t operate without them. For most small rare disease patient groups trustees are often not only the people providing oversight and...read more
In this week’s blog we are taking a quick look at how the Findacure team have settled into life in isolation, and how they are keeping busy away from work.read more
. In our recent webinar Findacure CEO Rick Thompson, and our Scientific Advisor Dr David Cavalla gave an overview of drug repurposing and tried to explain why it is so high on the agenda for covid-19, and why it should be at the forefront of our minds for rare diseases.read more
In this week's blog, we'd like to introduce you to Jo Pisani. She has been a partner at PwC, where she lead the UK Pharmaceuticals and Lifesciences business. Jo is one of our two newly appointed Trustees! Hi Jo, what made you decide to become a trustee? I retired from...read more
Lucy McKay grew up watching her mother grow a rare disease patient support group into a trail-blazing charity. Her eldest brother was affected by MPS II which led her mother to found the MPS Society. Lucy grew up alongside the patient group and when she went to...read more
"How will you help forge a gender equal world? Celebrate women's achievement. Raise awareness against bias. Take action for equality." (IWD.com, 2020) The 2020 #EachforEqual campaign runs all year long and definitely hasn't become less empowering since International...read more
Every year Findacure holds its conference – Drug Repurposing for Rare Diseases – in late February to celebrate Rare Disease Day. This is a chance for a diverse collection of people with an interest in rare diseases and drug repurposing to gather together and share their knowledge and experiences, and hopefully drive forward the redevelopment of old drugs for rare patients.read more
The first Friday of March is Employee Appreciation Day, so in this week’s blog Rick gives us a quick insight into the fantastic member of the Findacure team, the work they do on a daily basis, and a few of their quirkier features.Mary Rose As Head of Operations, Mary...read more