Letter to the Longford Leader editor: We must ensure that those with rare conditions get the appropriate treatment

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A reader has issued a rallying cry to ensure, despite the ongoing Covid-19 controversy, those with rare conditions get the appropriate treatment and care that they need

In our collective efforts to combat one disease, it is important that those with other diseases are not left behind.

Rare Diseases Ireland, the national alliance for rare disease voluntary groups, recently published some research among people with rare diseases, their family members and their carers.

It found that nearly three quarters of respondents are concerned that their condition, or that of their loved ones, may deteriorate due to the impact of Covid-19 on their treatment and care.

This is evidenced by the fact that more than half have had scheduled medical appointments cancelled in recent weeks.

Many respondents expressed frustration with the lack of consultation from their health care providers and how they have been left to fend for themselves.

Some are unsure who is now managing their care and are concerned that they may end up at the bottom of public waiting lists with huge delays in getting seen.

While we all, quite correctly, pull together to combat Covid-19, it is vital that Government and health authorities muster the same resolve to support the estimated 300,000 people in Ireland living with a rare disease.

It is, of course, crucial that we make contingency plans for any future upsurge in Covid-19 cases, which we very much hope will never come to pass.

However, we also need to see a resumption of hospital and community services to ensure that those with rare conditions get the appropriate treatment and care that they need.

Their lives may depend on it.

Yours sincerely,

Vicky McGrath
CEO Rare Diseases Ireland