Sinn Féin spokesperson on Health David Cullinane TD has welcomed Rare Disease Day 2022, and has recommitted to developing a new, all-island approach to supporting people with rare diseases and investing in interventions which can improve quality of life for patients.
He raised concerns over repeated failure by the Minister for Health to bring forward a new policy framework since the previous policy lapsed in 2018, and called on him to develop an all-island strategy for developing services and supports.
Teachta Cullinane said:
‘Rare diseases collectively affect up to around 300,000 people in Ireland.
“According to findings published last month by Rare Disease Ireland, more than one in three children with a rare disease waited over five years for their diagnosis.
“Many have been forced to go abroad for diagnosis and care.
“Patients are being referred from consultant to consultant and are waiting far too long for a diagnosis and treatment.
“Care delayed is care denied. By failing to develop services and supports for rare disease patients, the government has repeatedly failed to address the tortuous journey for too many patients.
“Today is an opportunity to recommit to people with rare diseases and their families to better support them and to recommit to developing an all-island rare disease strategy.
“We need to maximise the potential of the island-wide population when investing in access to medicines, innovative treatments, improved diagnostics, support networks, research, education and training.”