Rare Ireland held their annual conference and disability open day was held at the Shamrock Lodge Hotel in Athlone on Friday 18th October. They also held their 1st Charity Ball on the evening of the 18th celebrating the rare families.
Alan & Michelle embark on a journey to advocate for those affected by multiple sulfatase deficiency
May 16, 2024
Alan Finglas, alongside his wife Michelle, embarked on a journey to advocate for those affected by multiple sulfatase deficiency (MSD) after their son Dylan’s diagnosis
A revolutionary treatment – dubbed the “most expensive drug in the world”
May 15, 2024
A revolutionary treatment – dubbed the “most expensive drug in the world” – which will give patients with a fatal genetic disease a chance to