6. Deputy Peter Roche asked the Minister for Social Protection if his Department has considered introducing additional protections or supports for people living with rare diseases, given the unique financial and social challenges they face; and if he will make a statement on the matter. [15529/26]

Sentiment score: 0.15

Rare diseases collectively affect of thousands of people across our State. What makes the situation different is that the State's systems were never designed around lifelong, complex conditions that do not fit neat diagnostic or disability categories. Parents are becoming full-time carers, care co-ordinators and medical advocates, often overnight and, indeed, permanently, while simultaneously experiencing a collapse in their household incomes and a rise in unavoidable costs. They must repeatedly prove eligibility for assistance that measures disability in static terms.

Sentiment score: -0.14

Many people living with rare diseases fall between multiple systems - health, disability and social protection. Approximately one in 17 people will live with a rare disease during their lifetime and, in many cases, these conditions are lifelong, disabling and involve frequent hospitalisations with one parent or carer leaving their employment entirely, yet many of these individuals struggle to qualify for disability supports, domiciliary care allowance or long-term illness-related benefits because assessment criteria were designed around the more typical disabilities and predictable conditions. Has the Minister examined whether the existing social protection systems are appropriate for people with rare diseases, and will he consider additional tailored supports, including assessment flexibility or a dedicated pathway to reflect the unique financial or caring burdens faced by their families?

Sentiment score: 0.42

I appreciate the Minister’s honesty and his response. Most of us get representations into our constituency offices in that regard. I would have thought before arriving to this House that that would not be the norm but it is beginning to become the norm where we encounter people who have those very conditions, those rare diseases. It is imperative we find a model they can fit into and that their lives are not complicated any further. Having a rare disease can be quite complex, difficult and upsetting for families who find themselves having to manoeuvre through life with that rare disease.

Sentiment score: 0.07