In support of Youth Mental Health Awareness Day (7th September), we’re launching our #RareMinds: Youth Campaign to highlight the voices, experiences and challenges faced by teens and young adults in the rare disease community. Learn how you can get involved!
Once again, we’re offering patient groups the chance to partner with a student entering The Student Voice Prize. If you’d like to learn more and/or be potentially paired with a student, please fill out our Patient Participation Form!
Join us on 22nd September – 24th September to gain the support and guidance you need to build meaningful connections with industry, medical professionals and patient groups and charities.
Join us on Wednesday, 26th August at 10:30am as we discuss your experience with registries and registry development. This is your chance to connect with other patient group leaders and advocates in the rare disease community!
Our latest guide helps you to re-evaluate your board so that you can take the steps needed to make it better, more diverse and well managed. View guide!