National Rare Disease Office To Open Soon

April 2, 2015 Alpha1 Admin Comments Off

The HSE has stated Ireland’s first National Rare Disease Office is expected to open officially in the second quarter of 2015. The establishment of a National Rare Disease Office (NRDO) was one of the key recommendations of the Department of Health’s first national rare disease plan, ‘A Rare Disease Plan for Ireland 2014-2018’, which was published last July.

The primary benefit of the new National Rare Disease Office will be the streamlining of access to diagnosis and treatments for patients.The new office will be responsible for building information on the availability of expertise in Ireland for rare diseases and making this information available to both patients and doctors. It will also establish a helpline for patients with access to a genetic counsellor, support the HSE in the mapping and validation of centres of expertise in rare diseases in Ireland, as well as having a long-term role in rare diseases surveillance.

It is expected the National rare Disease Office will be based in the Mater Hospital in Dublin pending the establishment of the new National Children’s Hospital. See here for more details.

Stranorlar Health Centre, Pound Street, Stranolar, Co. Donegal – See more at:

Stranorlar Health Centre, Pound Street, Stranolar, Co. Donegal – See more at: http://www.mypois.com/mpoi.php?n=dr-eileen-coyne-&i=168296#sthash.6PoRiCJQ.dpufIreland’s first National Rare Disease Office (NRDO) is expected to open officially in a number of months, the HSE has stated.Ireland’s first National Rare Disease Office (NRDO) is expected to open officially in a number of months, the HSE has stated.

Info Centre

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-1 Foundation Ireland provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. It is a simple blood test. For more details ring 01-8093871 or email alpha1@rcsi.ie