First Rare Disease Plan finally launched in Ireland
IT was the day his son should have celebrated his sixth birthday but instead Tony Heffernan spent it with Health Minister James Reilly at the launch of Ireland's first Rare Disease Plan.
Mr Heffernan said it was a "bittersweet day" but he was glad the plan was finally published.
He called on the Government to fully implement its recommendations and provide the Health Service Executive with the resources it needs so that the document doesn't become a "dust collector".
Mr Heffernan, whose son Liam, pictured, died seven weeks ago from the rare and fatal Batten's Disease, was the patients' representative on the national steering committee National Disease Task Force that drafted the country's first national plan for rare diseases.
The plan recommends the setting up of a National Office for Rare Diseases and a Clinical Care Programme.
It will also identify centres of expertise for various rare diseases, provide a helpline for patients and their families and be responsible for the surveillance of rare diseases.
It will provide up-to-date information regarding new treatments and management options including clinical trials.
"A policy is only as good as the result it produces and I will personally monitor, measure and report on the effective rollout of the plan by the national stakeholders responsible for its implementation," said Mr Heffernan.