How has COVID-19 impacted people with rare diseases?

The COVID-19 pandemic has exacerbated the many challenges that people living with a rare disease face.

During the first wave of COVID-19 in Europe, access to the care and treatment that patients rely on was disrupted, and the stress and anxiety of daily life heightened. The pandemic has also changed the relationship of people living with a rare disease with the healthcare system, opening doors to more digital health options

 

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases