Rare Disease Day 2018 (the last day in February) was celebrated in over 90 countries and regions and focused on research. Not only do patients need researchers to discover diseases and develop treatments/cures but also researchers need patients to participate in trials to ensure research is meaningful. 

As the Rare Disease Day website notes, "Patients work tirelessly to build up a network around their disease. They connect with each other online through patient groups and at conferences. In doing so, they create the critical mass of patients needed for research on their disease to take place. Patients also create a community of relevant people focused on their specific disease. They are at the centre of an ecosystem and work to bind together all relevant stakeholders involved in research, including researchers, companies, healthcare providers and policy makers."

Three receptions were held in Cardiff, Edinburgh and London Parliaments in the UK, featuring MP’s, the CEO of Genetic Alliance and patients or family members. Discussions included progress of the UK Strategy for Rare Diseases plus possible future changes to improve the lives of those affected by rare conditions and their families.

To learn more about Rare Disease Day and how you can participate in future see https://www.rarediseaseday.org