pandemic Coronavirus Cerebral palsy

Coronavirus: Ontario patients, caregivers highlight impact of pandemic on rare disease community

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globalnews.ca

Rare Disease Day, meant to raise awareness for rare diseases and the impact on patients’ lives.This year, amid the COVID-19 pandemic, there are calls for greater support for the rare disease community and improved access to treatment.“These are people that fall through the cracks and fall through the cracks,” said Durhane Wong-Rieger, president and CEO of Canadian Organization for Rare Disorders. “Collectively this is a huge, huge disease area and quite frankly it’s a public health issue.”It is estimated one in twelve Canadians is living with a rare disease.

These are conditions that range from serious to life-threatening.Wong-Rieger pointed out the pandemic has taken a major toll on many of them, and their caregivers.

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