Louise O'Reilly
Ceist:1311. Deputy Louise O'Reilly asked the Minister for Health the cost of establishing and operating an all-island rare diseases registry; and if he will make a statement on the matter. [27820/17]
Amharc ar fhreagraTuesday, 20 June 2017
Ceisteanna (1311)
Freagraí scríofa
The National Rare Disease Plan for Ireland 2014-2018 recommended that a network of rare disease registries covering the island of Ireland be developed taking into account relevant legislation and international best practice. The issue of north south cooperation relating to rare diseases so as to improve information provision to rare disease patients, registries and the potential for collaboration on the management of patients is under consideration as part of ongoing North/South work.