Ireland - Healthcare Professionals

Health Service Executive (HSE)

The HSE is responsible for providing public health and social care services in Ireland.  The HSE is organised into 6 health regions. Each health region provides health and social care services for the people in that area. More than 150,000 people work with the HSE.  The national and regional leaders help to keep the organisation running efficiently and in line with national healthcare standards.

Visit the HSE website for more information: https://about.hse.ie/

National Rare Diseases Office (NRDO)

The National Rare Diseases Office (NRDO) was established by the HSE in 2015 as the national rare disease ‘coordination hub’ and the HSE main contact and driver of rare disease initiatives and projects. In accordance with the National Rare Disease Plan for Ireland and the HSE Model of Care for Rare Diseases (2019), NRDO aims to inform, support and empower people affected by rare conditions, their families and healthcare professionals.

Visit the NRDO website for more information: https://www.hse.ie/eng/services/list/5/rarediseases/whatwedo.html

National Rare Disease Information Service

The National Rare Disease Information Service provides current and evidenced based information on rare conditions and signposts to available rare disease expertise, supports and resources.

The information service assists:

• People who are affected by a rare or genetic condition, or an undiagnosed, likely rare condition (Syndrome Without a Name)
• Parents, family members and carers of someone with a rare or genetic condition
• Rare Disease patient organisations
• Doctors, nurses, genetic counsellors, social workers and other health care professionals who work with people with rare or genetic conditions
• Scientists who are studying rare or genetic and need information for their research or for people taking part in studies
• Policy-makers and other government agencies

 To contact the National Rare Diseases Information Service email:  rare.diseases@mater.ie

Orphanet Ireland

Ireland is a full member of the Orphanet consortium since 2015. The NRDO is the National Coordination Hub for Orphanet Ireland.

Orphanet provides free access to high-quality scientific information on RDs that is expert-validated and continuously updated, and a directory of expert services by disease: centres of expertise, laboratories and diagnostic tests, patient organisations, research projects, clinical trials, and clinical practice guidelines.  This facilitates access to RD expertise and knowledge.

NRDO Information Scientists curate and update the Irish information and data on

• Irish expert centres
• Irish patient organisations
• Irish healthcare professionals
• Irish clinical trials

Visit the Orphanet website to access Irish information and data:  https://www.orpha.net/

European Reference Networks (ERNs)

 Ireland is a member of 18 of the 24 ERNs

 Rare Disease Care Pathways

The National Rare Diseases Office has developed a series of integrated care pathways for rare conditions. These care pathways are based on clinical practice guidelines and developed in collaboration with national clinical experts and Irish patient organisations. Care Pathway Development includes Mapping of National Multidisciplinary RD Expert Centers as well as the Orphanet diseases definition and codes.

To access the current list of approved rare disease care pathways visit www.hse.ie/eng/services/list/5/rarediseases/care-pathways/