RDI Statement on COVID-19 response and recovery

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Rare Diseases International (RDI) wishes to bring to the urgent attention of policy makers and authorities the increased vulnerability that the 300 million people living with a rare disease (PLWRD) worldwide are facing during the COVID-19 pandemic. The impact and recommendations outlined in this statement can be extended to the undiagnosed population, a group within the rare disease community that is experiencing paralleled vulnerabilities, in addition to facing a diagnostic odyssey.   

RDI commends the commitment and actions of health and social care professionals, as well as policy makers from all over the world during the crisis. In addition, RDI calls for continued and reinforced efforts to: 1. Eliminate the risk of exacerbating preexisting inequalities; and 2. Protect people living with a rare disease from being discriminated and becoming even more vulnerable in COVID-19 response and recovery strategies, as well as in long-term health system restructuring plans.  Rare Diseases International (RDI) wishes to bring to the urgent attention of policy makers and authorities the increased vulnerability that the 300 million people living with a rare disease (PLWRD) worldwide are facing during the COVID-19 pandemic. The impact and recommendations outlined in this statement can be extended to the undiagnosed population, a group within the rare disease community that is experiencing paralleled vulnerabilities, in addition to facing a diagnostic odyssey.   

RDI commends the commitment and actions of health and social care professionals, as well as policy makers from all over the world during the crisis. In addition, RDI calls for continued and reinforced efforts to: 1. Eliminate the risk of exacerbating preexisting inequalities; and 2. Protect people living with a rare disease from being discriminated and becoming even more vulnerable in COVID-19 response and recovery strategies, as well as in long-term health system restructuring plans.   The onset of the COVID-19 crisis has unveiled pre-existing health, social and economic inequalities that prevail between and also within countries of the world and has demonstrated the need to urgently address them. PLWRD are a vulnerable population that is disproportionately impacted considering the chronic, highly complex, progressive and severely disabling nature of their diseases, which generate specific care needs. As such, PLWRD need to be considered a high-priority high-risk population during COVID-19 response and recovery.   

RDI welcomes the efforts led to protect people living with non-communicable diseases (NCDs)1 and people living with all kinds of disabilities2 during the COVID-19 pandemic, and wishes to highlight that PLWRD are often marginalised, underserved, and forgotten even within these populations. With this statement, RDI urges authorities, NCDs and disability advocates to acknowledge that PLWRD are an identifiable vulnerable population having specific needs and concerns linked to rarity and requiring a targeted approach during COVID-19 response and recovery.

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