Genetic Alliance UK launches COVID-19 advice hub

The charity Genetic Alliance UK has launched an online hub offering advice on COVID-19 to patients affected by genetic, rare and undiagnosed conditions.

A community of around 3.5 million people in UK uniquely challenged by COVID-19 can now access vital healthcare guidance, it says.

"The pandemic has caused widespread concern for those who have extremely complex health conditions – such as motor neurone disease. These vulnerable people, their families and carers have faced a lack of clear guidance on managing their healthcare during this crisis," the Alliance said.

The hub – covid-19.geneticalliance.org.uk – offers a variety of advice on how people with such conditions can best protect themselves and continue to "manage their condition with confidence".

"We desperately need clear commitments from governments that will protect people living with rare diseases and reduce their risk of contracting COVID-19," commented Genetic Alliance UK chief executive Jayne Spink.

"It is also vitally important that any person with a rare disease is not disadvantaged during this crisis, not only terms of accessing the care and treatment they need should they contract COVID 19 but also in terms of accessing the ongoing care, support and treatment they need in managing their rare condition. We are currently a long way from being able to offer the assurances to the rare disease community that are so desperately needed."

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