Irish Alpha-1 research published last month in “Thorax”, one of the world’s leading respiratory medicine journals, highlights the crucial importance of patient registries for rare conditions. Patient registries are confidential collections of data that store demographic (e.g. age, sex, height, weight) and medical information on individuals with various health conditions. TheContinue Reading
AlphaNet is pleased to announce the appointment of Dell Witcher to the board of directors, effective May 14, 2020. “Dell’s expertise and involvement in our board will greatly benefit the Alpha-1 community.” “We are excited to welcome Dell to AlphaNet’s board of directors. Dell’s extensive board leadership history at theContinue Reading
We need your help! Being led by the European Alpha-1 Research Collaboration (EARCO), a survey has been created to give us all input on what we think are the priorities for research should be. We are asking people with Alpha-1 Antitrypsin Deficiency (AATD), or their families and friends, to tellContinue Reading
Two dozen CSL Behring employees are pedaling the highways and byways of Cape Cod, Massachusetts, this weekend as part of the Alpha 1 Foundation’s Escape to the Cape Bike Trek team, which raises funding and awareness for Alpha 1 antitrypsin deficiency. Escape to the Cape is the Alpha 1 Foundation’s component ofContinue Reading
The Alpha-1 Foundation earned the 2019 Platinum Seal of Transparency, the highest level of recognition offered by GuideStar, the world’s largest database and source of nonprofit information, and received a 4-star rating from Charity Navigator, the largest charity evaluator in the U.S., for the ninth consecutive year. By sharing metricsContinue Reading
The Alpha-1 Foundation hosted the 4th International Research Conference and the 7th Global Patient Congress, April 3-6, 2019, in Dubrovnik, Croatia. The Patient Congress was attended by 160 participants representing 32 countries. The Patient Congress began the evening of April 4th with a welcome reception and a joint dinner withContinue Reading
May 21, 2018 AlphaNet President and CEO Robert C. Barrett has announced his retirement after 20 years at the helm of the innovative not-for-profit organization. The AlphaNet Board of Directors has named Mark B. Delvaux as his successor effective June 25, 2018. Barrett will continue as an advisor to BoardContinue Reading
MIAMI and BOSTON, Jan. 31, 2018 /PRNewswire/ — The Alpha-1 Foundation celebrates the first granting of the John W. Walsh Translational Research Award in Alpha-1 Antitrypsin Deficiency, an honorable award named after John W. Walsh, co-founder of the Alpha-1 Foundation, a visionary man who dedicated his life’s work to finding a cure for Alpha-1 Antitrypsin DeficiencyContinue Reading
