Back in September, we hosted a three-day online workshop that focused on how patient groups can successfully collaborate with stakeholders from across the rare disease spectrum. The goal of the workshop was to help patient groups collaborate with industry, pharma and other rare disease patient groups so that the rare community can advocate for change as one, united force. See what you missed!
This week, we take a look at the Findacure RareChat sessions that have been running throughout lockdown that offer a chance for patient group representatives to have informal chats, network and share resources and experiences.
This week’s blog is guest written by Robyn Silverton, a holistic therapist and trained physiotherapist who also has the rare condition of PK deficiency, a haemolytic anaemia of which there are 1 in 200,000 patients worldwide. Robyn shares some of her story and what keeps her positive in the face of the challenges associated with having a rare disease.
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.
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.