Sandra Courbier

Sandra Courbier joined EURORDIS as Patient Voices Manager in June 2015, later becoming Social Research Director - Rare Barometer Programme Lead. She is based in the Paris office.

She is responsible for consulting patients and their representatives to support advocacy and policy-making activities at EURORDIS. This is mainly done through the Rare Barometer programme which consists of surveys aiming to collect qualitative & quantitative data on the experience and expectations of rare disease patients and their families to facilitate and streamline the inclusion of patient perspectives into EURORDIS advocacy work. She also facilitates the generation of patient opinions on ethical, legal and social issues around rare disease research through European Commission-funded research projects.

Prior to joining EURORDIS, Sandra worked for the French Governmental information service, obtaining a broad experience of health-related surveys and studies, public communication and public affairs. While working for TNS Opinion in Brussels, the company responsible for the Eurobarometer, she also gained knowledge on international survey research.

She holds a master in survey methodology applied to political science and sociology from the Institut d’études politiques de Grenoble. Sandra speaks French and English. 

Almost 12 months after the WHO declared a global COVID-19 pandemic, people with rare diseases can reflect on a turbulent year – even if there are some positive lessons to be learned in how services are delivered. While the pandemic continues, most reflections on the crisis come to a common conclusion: everyone suffered, but not equally. Vulnerable groups were hit hardest; inequalities were exposed and exacerbated. As an advocate for people with rare diseases, I have seen first-hand how access to care was disrupted. This resulted in further delays to diagnosis and interruptions in treatment, as well as stalling progress on research and innovation. The impact of this can be profound for patients, their families and wider society. When we talk about rare diseases, we mean disorders that affect less than one in 2000 people. However, while each of these conditions is relatively ‘rare’, is not uncommon to suffer from a rare disease. That is because there are more than 6,000 diseases that meet these criteria, affecting up to 30 million EU citizens. Patients’ voices To understand the impact of the pandemic on people living with rare diseases, we conducted a survey of 7,000 people in 36 countries during the first wave of the pandemic. The results confirmed our worst fears. They showed that 84% experienced disruption of care; 64% were concerned this would be detrimental to their health; and three in 10 worries this could be life-threatening. We saw a significant impact on access to diagnostic tests and chemotherapies/infusions, as well as cancelled surgery. Psychiatric care was also interrupted at a time when respondents reported heightened anxiety and depression triggered by isolation. These issues returned, to varying degrees, during subsequent waves this winter. Some service providers have learned lessons from the first wave, while others still have a long...