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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The Alpha-1 Action Group are holding a protest at the gates of Dáil Éireann, Kildare Street, Dublin 2 tomorrow Wednesday, May 31st at 12.30pm. The protest is to urge the Government to fund the life-changing Respreeza therapy as soon as possible. Calling on all those affected by Alpha-1, their families, and friends to attend on the day to support the group and this important cause.

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