Blog

Welcome to the Cooley’s Anemia Foundation blog!

This blog will be a place for the Cooley’s Anemia Foundation to share information from and thoughts of invited members of the thalassemia community.


Travel Guidance for Patients & Families with Thalassemia, Sickle Cell Disease & Rare Anemias

Travel Information for Thalassemia Patients

We are delighted to share with you TIF’s latest publication for patients living with thalassemia, sickle cell disease (SCD) and other rare anemias and their families entitled ‘Travel Guidance for Patients and Families’.

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Agios Launches Advocacy Advisory Council for Thalassemia, PK Deficiency, SCD

The council will bring together patients, caregivers and physicians from these communities, which share commonalities in underlying disease pathology, difficulties in transitioning from pediatric to adult care and quality of life concerns.

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Join CAF’S Westchester-Rockland Chapter for a “Night at the Races” April 1

The Cooley’s Anemia Foundation’s Westchester-Rockland Chapter welcomes all to experience its 25th annual “Night at the Races” benefit on April 1, 2023.

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CAF Board Exec Maria Hadjidemetriou Represents Thalassemia Community in Maybelline Campaign

CAF Board Exec Maria Hadjidemetriou stars in Maybelline's "We Speak" diversity campaign.

When Maybelline, the iconic beauty brand behind Maria’s first blush, invited her to star in their “We Speak” disability pride campaign, she seized the opportunity to become the very thing she longed to see as a child—a model proudly representing the thalassemia community.

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FDA Approves bluebird bio’s ZYNTEGLO®, the First Gene Therapy for People with Transfusion-Dependent Beta-Thalassemia

zynteglo approved for beta-thalassemia

bluebird bio, Inc. announced the FDA has approved ZYNTEGLO®, a one-time gene therapy custom-designed to treat the underlying genetic cause of beta‑thalassemia in adult and pediatric patients who require regular red blood cell transfusions.

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Patient Profile: Lisa Guidice, Proud Jersey Girl #ThrivingWithThal

February 21, 2017- Lisa Falco Guidice is an active member of the CAF patient community, and we thank her for sharing her inspiring story. I am a proud Jersey girl, born in Summit and raised in Florham Park. After being diagnosed with thalassemia major at 6 months old, my mother did everything she could to […]

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CAF Westchester-Rockland Chapter Hosts “Night At The Races” Benefit on April 1

February 13, 2017 – The CAF Westchester-Rockland Chapter welcomes all to experience the annual “Night at the Races” benefit on April 1st, 2017. This fun-filled event features a buffet dinner, open bar and raffle prizes. Guests will bet on the video horse races throughout the evening. The event will begin at 7pm at the V.I,P, […]

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Janelle Trieu Selected for 2016 CAF-ApoPharma Distinguished Scholar Award

January 11, 2017- The Cooley’s Anemia Foundation is pleased to announce that Janelle Trieu has been named recipient of the 2016 CAF-ApoPharma Distinguished Scholar Award. The Award is presented to U.S. individuals with a clinically significant form of thalassemia who have chosen to pursue postgraduate doctoral level studies in medicine or science. Janelle is currently […]

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