Leading a rare disease community is unique in its demands, and can be both rewarding and demanding. Whether you are a sole worker or part of a team, come and discuss with other rare disease advocates the challenges of juggling your own psychological wellbeing with that of your community. Join us to discuss: • The […]
Developing your rare disease patient group from the bottom up - you can now sign up for the third webinar in the series!This series will look at how rare disease patient groups can attract and retain the right people to ensure their organisation's success and longevity. It kicked off back in May with a session […]
In-person workshop: Building positive partnerships between patient groups and industry 10:00 - 16:00, 21st September 2022, The Royal Institution, LondonWe are delighted to announce our next in-person workshop focusing on how to build positive and equitable partnerships between patient groups and the life sciences industryCollaborating with the pharmaceutical industry is often a key aim for […]
Our annual conference, Drug Repurposing for Rare Diseases, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. Our conference sparks cross-sector conversation, uniting the expertise of diverse groups to inspire meaningful, patient-centred drug repurposing research for rare diseases.
During this workshop, we will hear practical tools and strategies to look after your own wellbeing as a rare leader, manage expectations, avoid burnout and deal with the distress of others.
Join our RareChat on the 14th of December to discuss the cost of living crisis and the effect it's having on patient groups