Denis Naughten (Roscommon-Galway, Independent) | Oireachtas source

Patients with rare diseases face even greater challenges in accessing new treatments or orphan drugs, as they are often called. On average, they wait nearly 26 months. This delay is especially tragic, as approximately 30% of children with a rare disease will pass away before their fifth birthday. The impact of these delays on patients with rare diseases is profound. How can we defend a situation where these children may wait up to half of their short lives to access Irish-manufactured medications that could prolong their lives? We must prioritise the needs of patients with rare diseases and ensure that they receive timely access to treatments that could offer them the best hope of quality time with their loved ones. Why not use the access for these children to these vital drugs as a pilot case to resolve the blockages in accessing Irish-manufactured drugs for Irish patients? By doing so, we can make a significant difference to their lives and to those of their families.

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