Rare Diseases

Rare Diseases

Access to care in respect of rare diseases abroad is covered under the CBD in exactly the same as access to care for any other treatment/condition.  The patient follows the same pathways:

  • a GP referral for an outpatient consultation with a consultant abroad
  • or the treating consultant and the patient complete the application form for prior authorisation for inpatient care.

Information on rare diseases is available on orphanet (www.orphanet ).  Orphanet gives a list of diseases which are considered rare. 

The National Rare Diseases Office of the HSE is currently n the process of collecting information about rare disease management centres across the country and may be able to provide information on specific rare disease treatment centre locations.  The National Rare Disease Office is contactable at rare.disease@mater.ie or view their webpage at  http://www.hse.ie/rarediseases/