As a follow on from the 2014 study 'Web Information for Families of Children with Rare Diseases' The Saoirse Foundation is pleased to announce an addition to the proposed website of parents of
The new National Rare Disease Office was officially opened by Minister for Health Leo Varadkar, T.D. in the Mater Hospital in Dublin yesterday, June 4th. (more…)
A recent meeting in Dublin in November 2014 highlighted the area of public and patient involvement in research (known as PPI). PPI describes a variety of ways that researchers can engage with people
There are just four days to go until the VHI Women's Mini Marathon which takes place next bank holiday Monday, June 1st at 2pm. As ever we encourage ladies to take part to
Simon Hamilton, NI Health Minister recently launched a new report which examined progress made in reducing exposure to second-hand smoke in Northern Ireland incorporating a 5 year review of smoke-free legislation. (more…)
The American Thoracic Society (ATS) 2015 International Conference will take place May 15-20 in Denver Colorado. The ATS is a leading medical association dedicated to advancing lung, critical care and sleep medicine. (more…)
Over 200 people from 26 countries attended the 5th Alpha-1 Global Patient Congress in Barga, Italy earlier this month. Speakers included renowned Alpha-1 scientists, clinicians, industry partners, patients, caregivers and families. (more…)
The 20th of May each year is celebrated as International Clinical Trials Day and to mark this a public open day is being held at the Clinical Research Facility (CRF) in St. James’s
Alpha-1 Global is hosting the 2015 Alpha-1 Global patient Congress this weekend; 9-11 April in Barga, Italy. Alpha-1 patients from around the world as well as Alpha-1 community leaders, organisations and healthcare professionals will
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
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