HSE – National Rare Diseases Office
The HSE National Rare Diseases Office (NRDO) was established by the HSE in 2015. It serves as the national rare disease ‘coordination hub’ and the HSE main contact and driver of rare disease initiatives and projects. The NRDO’s programme of work is strategically aligned to the National Rare Disease Plan for Ireland (2014-2018) and the HSE Model of Care for Rare Diseases (2019). The NRDO is committed to informing, supporting and empowering people affected by rare conditions, their families/caregivers and healthcare professionals.
The NRDO is based at Mater Misericordiae University Hospital, Eccles St., Dublin 7 and may be contacted at email@example.com
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European Reference Network
European Reference Networks (ERNs) are virtual networks involving health care professionals across Europe. They aim to enable discussion on rare and complex conditions that require specialised treatment, and concentrated knowledge and resources.
Orphanet records Irish Centres that have been listed as part of the ERNs for rare conditions.
There are currently 24 ERNs across various themes (e.g. bone disorders, immunodeficiencies).
Ireland has membership to 18 different ERNs.
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Orphanet is the European reference portal for rare conditions and orphan drugs. Established in France in 1997, Orphanet has grown to include 41 countries across Europe and the Globe. Orphanet provides reliable, high-quality information with the aim of improving diagnosis, care and treatment of people with rare conditions
The Orphanet portal includes information on:
- Rare Conditions (and genes involved)
- Expert Centres
- Patient Organisations
- Professionals and Institutions
- Clinical Trials and other research
For furthr information about Orphanet please click here