“I’d love if there was more understanding of rare diseases among health professionals,” she says. The European Organisation for Rare Diseases — of which Rare Diseases Ireland is a member — states that the paradox of rarity is that even though “diseases are rare, rare disease patients are many”. Prof Eileen Treacy, clinical lead of the HSE National Rare Diseases Office and clinical professor of medicine of rare disorders at Trinity College Dublin says there are “significant challenges” for people with rare diseases. “They have been willing to, I guess, shine a light on the challenges of living with rare diseases, but also the hopes that people have for their future,” says Vicky McGrath, chief executive of Rare Diseases Ireland. Deegan says he got involved with the I am Number 17 campaign to increase awareness of rare diseases.

Source: The Irish Times February 06, 2024 11:30 UTC