Delayed diagnosis, lack of diagnosis or multiple misdiagnoses are common challenges for PLWRD, with devastating consequences for Persons Living with a Rare Disease and their families.
RDI is collaborating with the EURORDIS Barometer Programme and the Global Commission to gather meaningful data on experiences of diagnosis and obstacles along the journey for PLWRD and their families.
The survey – “The journey to diagnosis for people living with rare diseases”, was launched in June 2022 and will collect data and stories from PLWRD and their loved ones across the globe.
The survey project is designed and managed by the Rare Barometer Programme, EURORDIS’ signature survey programme generating data on patient perspectives with a particular focus on Europe.
- RDI joined the initiative to reach PLWRD and families globally. With support from the Global Commission, RDI is leading outreach and engagement to 6 pilot countries: Argentina, Australia, Brazil, Malaysia, South Africa, and the United Arab Emirates.
Along with the 23 European languages already used by the survey programme, Malay and Arabic were added to ensure full participation from all six countries.
RDI’s network and members are leading dissemination efforts in their respective countries.