People living with a rare disease have the right to reach their highest potential of well-being; join us in ECRD 2020 Stockholm to take part in discussions to inform and build the future ecosystem for rare disease policies and services.
The BPSU in collaboration with Medics 4 Rares Diseases, Cambridge Rare Disease Network, Findacure and Rare Revolution will be hosting a half-day symposium at the RCPCH conference 2020.
The British Paediatric Surveillance Unit invites you to this year’s event to enjoy afternoon tea and cakes, hear young people speak about their experience of living with rare disease and visit informational stands.
Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey. The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the diagnostic odyssey’. We need all UK based patient groups to take part. Read more to find out how…