A new project called "Your Voice Matters; stories to build a better health service" has been launched by the HSE in conjunction with IPPOSI. To improve the health service, the HSE wants to find out what patients and service users expect from it and to find out what matters most to people in Ireland.

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Can you imagine struggling to breathe…

Close your eyes and focus on how you breathe, how you take this basic task for granted, you just do it without thinking about it. It’s really no big deal… or is it?

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Alpha One Foundation calls on Minister to reconsider decision for patients who have no other therapy option -
Drug company, CSL Behring, urged not to stop therapy for 21 patients already receiving drug on "compassionate-use" basis -

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The Oireachtas Joint Committee on Health met on July 12th to discuss the process for the review and approval of Orphan Drugs.  The Alpha One Foundation represented approximately 60 Alpha-1 patients, at the meeting, 21 of whom are currently receiving a drug called Respreeza on a “Compassionate Use” basis and approximately 40 more who would benefit greatly from having access to the drug for the first time.    

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Want to get EDUCATED? Want to get INVOLVED? The IPPOSI Patient Education Programme is now open for applications. This is a 6-month blended-learning education programme, the first of its kind in Ireland, and is being piloted from September 2017 to March 2018 with a number of topics related to healthcare and the development of new treatments.

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