Join us, industry, pharma, medical professionals, researchers and fellow patient groups in celebration of innovative rare disease projects across the UK for the first-ever Virtual Rare Disease Showcase on 17th - 19th November 2020!
Join us on Wednesday, 16th September, at 10:30 am for our next RareChat: Engaging young people! Engaging with a younger audience may seem challenging, but we're here to tell you that it can lead to valuable new opportunities for your patient group.
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 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!
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