While we're gearing up for an unforgettable experience at our venue in Glasgow, we understand that not everyone can be physically present. That's why we're pleased to provide access to a virtual programme.
A selection of in-person sessions will be recorded and available to watch online, either live or on-demand. It's the perfect opportunity to be a part of our flagship event from anywhere in the world. See our virtual programme below. Rare diseases and conditions are those that affect less than 1 in people.
There are estimated to be over 7, rare diseases and 1 in 17 people will be affected by a rare disease at some point in their lives, equating to around 3. This session aims to improve understanding of the background to rare diseases, developments in rare disease policy and practice, and the impact that rare conditions can have on both the children and their families.
All paediatricians will regularly see children with rare diseases, and this session will hopefully improve understanding of the background to rare diseases, developments in rare disease policy and practice, and the impact that rare conditions can have on both the children and their families.
In this interactive and dynamic workshop we will explore the benefits and hear directly from young people by video. In groups we will explore the patient's, parents and health care practitioners perspectives of this. We will think about the possible pitfalls, challenges such as safeguarding and what age to start and practicalities of implementations, as well as digital and technological considerations and ideas for changing ones own practice.
