Back to homepage

Orphanet website Ireland entry point

Orphanet Ireland
Orphanet international services
  • An inventory and classification of rare diseases
  • An encyclopaedia
  • A directory of services: clinics, laboratories, research projects, registries, clinical trials, patient organisations
  • An inventory of orphan drugs
  • Guidelines, reports
  • A newsletter
Access these services in:


Welcome to the Orphanet Ireland National Website! 

This page presents the news, events and documents of national significance.  To access all information on rare diseases, orphan drugs and expert services visit the main Orphanet portal (www.orpha.net)

 


 

Orphanet Ireland is curated by staff in the National Rare Disease Office (NRDO) to develop a catalogue of rare disease resources in Ireland, hosted by Orphanet.  


RARE DISEASES IN IRELAND - NEWS

 

 

Rare Diseases Hub Ukraine

 

 

Rare Diseases Hub Ukraine, promoted by the European Commission, is an application that connects rare disease patients from Ukraine with patient organisations and hospitals, members of European Reference Networks (ERNs), with the aim of providing specialist medical support during this emergency. The 24 ERNs for rare and complex diseases are united to support all Ukrainian patients. Ireland has received membership to 18 ERNs which is a collaboration with over 40 Centres of Expertise and led from 5 major academic HSE teaching hospitals. These applications were supported by the National Rare Diseases Office.

 

Ukrainian patients with rare diseases can contact the application by registering and completing a form, by e-mail or by phone. The application including contact details and other useful information can be accessed via the following link: https://rarediseaseshub4ua.org/.

 

 

 

€1 Million Investment Announced for Rare Disease Clinical Trial Network (RD-CTN)

 

 

The Health Research Board (HRB) announced a €1 million investment in the RD-CTN on Rare Diseases Day 2022. The application by the RD-CTN was led by Dr Rachel Crowley and Dr Cormac McCarthy at University College Dublin (UCD). The National Rare Diseases Office (NRDO) based at the Mater Hospital is pleased to collaborate for this RD-CTN.

 


This investment will enable the advancement of rare disease research in Ireland, providing people with rare diseases access to the latest treatments and improved outcomes. Please see press release by HRB for further details on this welcomed investment:


https://www.hrb.ie/news/news-story/article/hrb-announces-e1-million-investment-for-rare-disease-clinical-trial-network-on-rare-disease-day-2022-1/

 

 

 

September 20th, 2021 Update

 

 

The most recent Health Service Executive guidance for people at higher risk from Covid-19 (coronavirus) can be found here. The Health Service Executive webpages about Covid-19 vaccination can be found here.

 

 

Several of the European Reference Networks for Rare Diseases have published guidance for diseases within their remit and Covid-19: you can find out about ERNs and link to the website for each ERN here.  A Webinar series was held in April to September 2020 by the ERNS about Covid-19 and rare diseases: you can find the videos of the webinars here. Please discuss all guidelines with your own treating specialist as some recommendations may be specific to treatment in other countries.

 

 

Rare Diseases Ireland, the Irish patient alliance for Rare Diseases, has published a research report on their Survey of Living with a Rare Disease in Ireland during the Covid-19 Pandemic.  You can read the report here. Connect to Rare Diseases Ireland at www.rdi.ie.

 

 

EURORDIS, the European Alliance for Rare Disease Patient Organisations, has published results of their Rare Barometer Survey of Living with a Rare Disease during the Covid-19 Pandemic.  You can read the report here.  You can connect with EURORDIS here.

 

 

The call for new members of European Reference Networks for Rare Diseases closed in December 2019.  Several networks of Irish healthcare providers, endorsed by the Department of Health, were among the 841 centres that applied to join the ERNs as full members.  The list of Irish health care providers joining ERNs will be available when the official results of the assessments for applications are announced in November 2021. 

 

 

 


 

 

Are you looking for...

Irish Rare Disease expert centres, laboratories and patient organisations?

All Irish information is held on the main database at www.orpha.net


Help with registering your rare disease activity on Orphanet?

Contact us at orphanet.ireland@mater.ie or  +353 (01) 809-7448 or refer to our page for expert centres here.

 

Information about rare diseases and supports in Ireland?

Consult the National Rare Diseases Office information services:

Website:  www.rarediseases.ie 

Telephone: + 353 (01) 854 5065

Email: rare.diseases@mater.ie

 





Access Orphanet services in Ireland and other countries in:
Legal noticeContact us — Last updated on: 22-08-17