Dáil Éireann Debate, Thursday - 2 May 2024
17. Deputy Pádraig O'Sullivan asked the Minister for Health further to Parliamentary Question No. 578 of 23 April 2024, if funding will be allocated via the estimates process this year considering that the implementation model was approved in 2022; and if he will make a statement on the matter. [19419/24]
View answerAmyloidosis is a rare disease and covers a group of conditions that occurs when a protein called amyloid builds up in organs.
There are a number of challenges with the diagnosis and treatment of Amyloidosis in Ireland due to the disparate range of ways those with queried amyloidosis present. Patients will often attend a wide variety of specialities before receiving appropriate testing and a formal diagnosis.
Currently, patients with queried amyloidosis can travel to the National Amyloidosis Centre in London under the treatment abroad scheme for diagnosis and treatment. Obviously, it is our preference that patients would not have to travel abroad and the Model of Care seeks to establish a National Amyloidosis service in Ireland.
I have been advised by the HSE that the Model of Care was approved by the Chief Clinical Officer’s Clinical Forum in October 2022. The Deputy will be aware that a new National Rare Disease Strategy is currently under development which will support the development of rare disease services in Ireland for those living with amyloidosis as well as other rare diseases.
