ADVOCACY

SURVEY ON COVID-19 & RARE DISEASES

Are you affected by a rare disease or a caring for someone affected by a rare disease? Then we strongly encourage you to share your experience on how the #COVID19 pandemic is having an impact on your life by completing this survey.

The survey is developed by the rare disease umbrella EURORDIS – European Rare Diseases Organisation and is available in 23 languages and open to rare disease patients, family members and carers around the world.

The main objectives of the survey are:
– Evaluate the impact of COVID-19 on rare disease patients’ medical care, social care and well-being.
– Identify measures and facilities that are helping rare disease patients to cope with the pandemic
– Identify aspects that may have a negative impact on rare disease patients care and well-being
– Identify potential long-term consequences of the pandemic

If enough people with OI answers worldwide – the OIFE can get useful data on consequences for people with OI specifically, which we can use in our policy work.