The National Rare Diseases Office (NRDO) was established in June 2015 by the Health Services Executive (HSE).  It is staffed by information scientists who have significant experience working with individuals and families affected by rare disorders.  The NRDO is based at the Mater Misericordiae University Hospital in Dublin 7. 

Rare Diseases Information Line: Freephone 1800 240365 or 01 854 5065 (Mon-Thurs inclusive 9.30am - 1.30pm).
Website: www.rarediseases.ie
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
General office queries: 01 809 7475

January 27th marked the launch of the EUPATI Toolbox on Medicines R&D – a massive online resource of over 3000 articles, factsheets, slides, infographics, webinars and videos on topics related to medicines research and development, including how patients can be involved throughout this process.  Discover this important new EUPATI Toolbox here.

 

 

EUPATI (or the European Patients’ Academy on Therapeutic Innovation) emerged because patients across Europe want and need more information on how medicines are developed. EUPATI focuses on education and training; to increase the capacity and capability of patients to understand and contribute to medicines research and development and also improve the availability of objective, reliable, patient-friendly information for the public.

On the other hand patient advocates play a key role in providing information, but may lack education and training to participate in research and drug development processes. The EUPATI Expert Training Course began in 2014 and is a unique opportunity offering patients and patient advocates expert-level training in medicines research and development. 8 Irish patients are currently enrolled.This innovative patient-led academy aims at developing educational material, training courses and a public internet library to educate patient representatives and the lay public about all processes involved in medicines development.  The aim is to help patients be more educated and involved in the research and development process of new medicines by offering reliable, objective, comprehensive, lay-friendly information and training.  By the time graduates finish their studies, they will have completed an intensive 14 months of e-learning and face-to-face training sessions on the medicines development and research process. So in Ireland we will have 8 EUPATI-certified patient experts equipped with the knowledge to make meaningful contributions to medicines research in Ireland and across Europe. 

 

COPD Support Ireland is a charity set up in 2013 to support all those living with a lung condition called chronic obstructive pulmonary disease (COPD).  COPD  is a term used to include chronic bronchitis, emphysema or a combination of both conditions.

COPD Support Ireland is Ireland's only national COPD support and advocacy body, bringing together local support groups from around the country, to help those living with, and caring for someone with COPD. These support groups are run by local people with the help of COPD Support Ireland.  Their aim is to support and provide information to those who are living with COPD or who have a family member who is living with COPD. To date support group meetings have began in Limerick, Castlebar, North Dublin, Dublin 15/Clonee, Cork, Waterford, Sligo, Tipperary and Bray.

A public meeting is taking place in Mullingar in the Greville Arms Hotel on February 18th at 6pm with the aim of setting up a support group in the Longford/Westmeath area. Guest speakers on the night include Dr Mark Sheehy, respiratory consultant in Mullingar Regional Hospital and COPD Support Ireland followed by a Q & A Session. If you or a family member are suffering from COPD this meeting is an excellent opportunity to find out more about the condition and relevant issues as well as potentially get involved in setting up a local support group.

 

 

What is Alpha-1 Antitrypsin?
Alpha-1 antitrypsin is a vital protein produced by the liver to protect the lungs. It provides protection from the harmful effects of infections and inhaled irritants, particularly tobacco smoke. It can be easily measured by a simple blood test. 
What is Alpha-1 Antitrypsin Deficiency?
Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition which, after cystic fibrosis, is the commonest genetic disorder in Ireland. It severely affects more than 15,000 people, with another 250,000 carriers also at risk of lung and liver disease on the island of Ireland. It is a proven genetic risk factor for chronic obstructive pulmonary disease (COPD).
How Do I Get Tested?
The Alpha One Foundation provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. For more details ring 01-8093871 or email alpha1@rcsi.ie.