The challenges of living with a rare condition are acknowledged in the programme for Government, which states that rare conditions are complex, their impacts are severe on the patients living with them and it can at times be difficult to access appropriate medication and technology. It is estimated that there are 300,000 people living with rare conditions in Ireland, 4% of whom are children and have received their diagnoses by the time they are 16 years of age. While rare diseases are individually rare, they are co…