Thomas Byrne (Meath East, Fianna Fail) | Oireachtas source

I thank the Deputy for providing the opportunity to discuss this matter and I acknowledge his work in the area. Many rare conditions are complex and the impact for patients living with them can be severe.

At times, it can be difficult to access appropriate medications and technology. The development of a successor to the previous national rare diseases plan is a key priority for the Department to ensure that there is a plan in place to drive improvements for rare disease patients and their families. As part of the development of the plan, a patient form will be established to ensure that voices of patients and families will be central to the development of policy. A steering group is being established to progress the development of the plan and will meet for the first time next week.

I once again thank the Deputy for raising this important issue and I assure him that the Government is fully committed to doing everything possible to help people living with a rare disease.

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