People with rare diseases concerned over impact of Covid-19, survey finds

Almost three quarters of people living with a rare disease in Ireland are concerned that their condition may deteriorate due to the impact of Covid-19, a survey has found. They are concerned about how the condition is deteriorating without access to the usual healthcare, and how an already complex health situation may be negatively impacted if infected with Covid-19. Vicky McGrath, chief executive of Rare Diseases Ireland, said that many respondents expressed frustration and disappointment with the lack of communication from their health care providers. “It is extremely worrying for people and the cancellation of such a large number of appointments will inevitably lead to spiralling waiting lists and extensive delays. “Many people with rare conditions spend years pursuing a diagnosis in the hope of therapeutic relief, so it is particularly frustrating when we hear of empty hospital beds and under-utilised resources.