Find a rare disease specialist or service

For certain rare diseases where this specialist care may not be broadly known, centres in Ireland providing services for patients with rare diseases may be found listed within our national rare diseases database, Orphanet. However, the specialist for your specific rare disease may not be listed in Orphanet. This does not necessarily mean that there is no expertise in Ireland for this rare disease – it may mean that the full range of services may not be available or that the service is in the process of being evaluated for inclusion in Orphanet. You can contact us for help finding an expert centre or rare disease specialist in Ireland.

Your GP may be able to direct you to the specialist expertise that is relevant to your condition and age in Ireland through HSE Services.

Appropriate services or treatments for my rare disease

Sometimes services are not available as soon as needed, taking account of a person’s current state of health and the probable course of the disease. In cases such as these your specialist consultant doctor may recommend an appropriate treatment in another EU country. In these cases an application to Treatment Abroad Scheme (TAS) may be appropriate.

The Cross Border Directive (CBD) also facilitates Irish residents to access healthcare in other EU countries. This directive describes Irish patients’ right to access the same healthcare in other EU countries that they would be entitled to within the public health system in Ireland. Referral for care under the CBD can be made by a GP, a hospital consultant and certain other HSE clinicians.

CBD Office contact details