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Patients and families

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

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:

Panic reactions
Relationship problems
Loss issues
Further information is available on the HSE website thorough the following link

New Registry 2020; The burden of COVID-19 in people affected by a rare disease link

European Reference Networks (ERNs)

ERNs are networks for expert clinicians and researchers to help diagnose and provide highly specialised healthcare for complex, rare or low prevalence diseases. ERNs use a dedicated IT platform and telemedicine tools to exchange information and share knowledge to help patients rather than the patient travelling to access care and expertise. ERNs are a joint initiative of the European Commission and Member States with support from the European Parliament.

There is now a searchable page with details about ERNs for the public on the European Commission website. The webpage contains factsheets about ERNs and locations of partner centres in each country.  Each of the 24 ERNs has their own website with more information about the rare diseases that the ERN covers

Please note that you cannot contact the ERNs directly, only doctors can send patient medical records with the patient’s consent. Please do not email the ERN website or specific ERNs with your personal details.