The Alpha-1 Action Group are holding a protest at the gates of Dáil Éireann, Kildare Street, Dublin 2 on 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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A baby with Alpha-1 who desperately needed a liver transplant found the perfect match when his godmother came through with the lifesaving gift. Eight-month-old Finn O’Sullivan has both Alpha-1 and biliary atresia, a rare disease of the liver and bile ducts that occurs in infants. Getting Finn a new liver was “exceedingly crucial,” said Adam Griesemer, MD, one of Finn’s transplant surgeons and the assistant attending physician at NewYork-Presbyterian/Columbia University Medical Center.

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On Tuesday last, May 9th the Alpha-1 Action Group called to the Department of Health to present a letter to the Minister for Health Simon Harris TD. The Alpha One Foundation were asked to share the letter written by the group, which outlines their concerns about future access to Respreeza and requests an urgent meeting with the Minister to discuss the situation.

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Pharmaceutical Company Deadline Looms for 21 Alpha-1 Patients On Life-Changing Respreeza Therapy.

With just 30 days to go, the clock is ticking towards a May 31 deadline when pharmaceutical company, CSL Behring, has indicated that it will withdraw its Respreeza therapy from 21 patients with the condition known as Alpha-1 (or genetic emphysema).

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