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.
Participate through this link.
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.
Participate through this link.
news & events
Opinion article: The patient’s journey to a diagnosis
Annelise, a Danish scleroderma patient for many years talks about the patient’s journey towards a diagnosis.
Testimony: António Pereira, music teacher
Meet António Pereira who has lived with and fought against Scleroderma for 40 years.
Testimony: Tânia Vieira, mother
Meet Tânia Vieira who talks about the biggest passion many mothers can relate to.