Surveys on patients’ experiences
During the COVID-19 situation, different areas such as Eurordis and Global Rheumatology Alliance are during surveys to monitor patients experiences with COVID-19.
The Rare Barometer Survey on rare diseases is active until 17 May, 2020.
It will enable EURORDIS to measure how the virus is affecting rare disease patients’ lives and give us the possibility to communicate facts and figures to decision-makers, so that people living with a rare disease are not left behind when handling the crisis.
The Global Rheumatology Alliance is inviting patients with rheumatological diseases (like scleroderma) to complete a survey regarding their experiences with Covid-19. You do not need to have had Covid-19 to participate, but your answers will help the rheumatology community.
news & events
Annelise, a Danish scleroderma patient for many years talks about the patient’s journey towards a diagnosis.
Meet António Pereira who has lived with and fought against Scleroderma for 40 years.
Meet Tânia Vieira who talks about the biggest passion many mothers can relate to.