The portal is a central hub of information and training for rare disease advocates, patient groups, and charities. It aims to encourage and empower the formation of new patient groups, enable existing patient organisations to grow and provide better support, and build the rare disease community by facilitating communication between users.
Our courses contain written guides, animated videos, presentations, and webinars to explain topics such as setting up a new organisation, good communications, fundraising, partnering with researchers and pharma, and supporting clinical trials. You can also connect to fellow users to ask questions and share your own knowledge in dedicated forum.
Sign up for free today.
Please watch this walk-through video to understand how to sign up to the portal and access the resources.