August 9, 2021 – bluebird bio has announced that a patient in their gene therapy trial for early cerebral adrenoleukodystrophy (ALD) has developed MDS (myelodysplastic syndrome). In line with their protocols, bluebird has shared relevant data and sought advice about this report with the regulatory authorities, trial investigators, and the independent Data Monitoring Committee for […]
August 9, 2021 – Today at noon, CAF Long Island Chapter launched its clothing fundraiser. This is their second fundraiser of this type, after their very successful winter merch fundraiser this past December. Items include a CAF logo sweatshirt and CAF logo quarter-zip pullover sweater. Sales end in two weeks on August 23, so we […]
August 9, 2021 – CAF is sharing a new video created by our social worker Kathleen Durst on Taking Care of Yourself. Access the video here: https://youtu.be/GZyxGsfmuXQ. U.S. thalassemia patients and family members should contact Kathleen at kdurst@thalassemia.org if they wish to learn more about the work that Kathleen does with members of our U.S. […]
