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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Alpha-1 patients receiving the life-changing therapy Respreeza protested outside the offices of the Health Service Executive (HSE) at the end of February to demand that the HSE and Minister commit to long-term funding of the drug. The patients said the treatment is highly effective and had changed their lives after the HSE agreed to engage in discussions with the company who supply the drug. 

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We were deeply saddened to hear of the passing of John Walsh, co-founder and CEO of the US Alpha-1 Foundation on Tuesday, March 7th. John was an inspirational leader for the Alpha-1 community not just in the USA but worldwide. A tireless advocate for Alpha-1 and the search for a cure, John’s enthusiasm was infectious and his warm personality opened many doors in the name of Alpha-1.

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