NRDO Patients and families

What is a rare disease?

 A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000. There are more than 6000 known rare diseases affecting up to 6% of the total EU population (at least 30 million Europeans). This means that at any time, approximately 300,000 people in Ireland have a rare disease.

Individuals and families who have received a new diagnosis of a rare disease can have many questions. If you are trying to find information about your rare disease or to understand what supports and services are available to you there is information on the links below that may help you. If you do not find the information that you are looking for staff in the National Rare Diseases Office will try to assist you: National Rare Diseases Office contact us.

Difficulty Finding Information

Find Specialist or Service

Newly Diagnosed or Undiagnosed

Benefits and Schemes

Rare Disease Support Groups

Disability Information

Rare Disease Ireland

Rare Disease Ireland is a patient advocacy national alliance for voluntary groups representing people affected by or at risk of developing a rare disease

Read RDI research report ‘Living with a Rare Disease in Ireland during the COVID-19 Pandemic

Resolution4Rare Join the global community of people living with rare conditions, led by Rare Diseases International, EURORDIS

Counselling in Primary Care (CIPC) 

This service is for people with mild to moderate psychological difficulties. It is a short-term counselling service that provides up to 8 counselling sessions with a professionally qualified and accredited Counsellor/Therapist. It is a service for medical card holders, who are 18 years of age or over, and who want help with psychological problems that are appropriate for time limited counselling in primary care. The service is suitable for people who are experiencing certain difficulties such as:

  • Depression
  • Anxiety
  • Panic reactions
  • Relationship problems
  • Loss issues
  • Stress

Read further information on mental health from the HSE