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.
Tuesday, February 6th, 2024
Care Walk is the Cooley’s Anemia Foundation’s annual fundraising event and opportunity to bring together the thalassemia community and its supporters around the country. Funds raised support medical research to fight thalassemia, a genetic blood disorder, as well as patient support services for thalassemia patients across the country. Click here to register for Care Walk!! […]
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: Blog, Care Walk, Events, Front Page, info foundation, info thalassemia, Links, Medical Research, News, person with thalassemia, Upcoming Events
: beta-thalassemia, Care Walk, care walk 2024, Care Walk Spotlight, CDC, Cooley's anemia, fundraiser, medical research, pharma, registration, Thal Pals, thalassemia, thalassemia awareness, thalassemia care, thalassemia care walk, thalassemia cure, thalassemia fundraiser, thalassemia medical research, what is thalassemia
Wednesday, January 17th, 2024
The FDA has approved Vertex and CRISPR’s gene-editing therapy Casgevy to treat beta thalassemia. Casgevy becomes the first therapy for the rare blood disorder to use the innovative CRISPR gene-editing technology. Vertex Pharmaceuticals and CRISPR Therapeutics have scored an FDA approval for their gene-editing therapy Casgevy (exa-cel) to treat transfusion-dependent beta thalassemia (TDT). The approval […]
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: Blog, Front Page, info thalassemia, Links, Medical Research, News, person with thalassemia
: beta thalassemia cure, beta-thalassemia, casgevy, Cooley's anemia, CRISPR, gene editing, gene therapy, medical research, pharma, thalassemia, thalassemia cure, thalassemia treatment, vertex
Wednesday, January 3rd, 2024
Agios Announces Phase 3 ENERGIZE Study of Mitapivat Met Primary Endpoint and Both Key Secondary Endpoints in Adults with Non-Transfusion-Dependent Alpha- or Beta-Thalassemia January 3, 2024 – Agios Pharmaceuticals, Inc. today announced that the global Phase 3 ENERGIZE study of mitapivat in adults with non-transfusion-dependent (NTD) alpha- or beta-thalassemia achieved its primary endpoint of […]
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: Blog, Front Page, info thalassemia, medical professional, Medical Research, News, person with thalassemia, Webinars
: Agios, agospharmaceuticals, alpha thalassemia, beta-thalassemia, cooleys anemia foundation, energize, i have thalassemia, medical research for thalassemia, pharma, thalassemia, thalassemia care, thalassemia treatment, what is thalassemia
Thursday, July 20th, 2023
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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: Blog, Front Page, info thalassemia, News, person with thalassemia
: anemia, Cooley's anemia, rare anemia, sickle cell, Thalassaemia International Federation, thalassemia, TIF, travel guidance
Tuesday, February 28th, 2023
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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: Blog, Front Page, News, person with thalassemia
: Agios, beta thalassemia major, biotech, Cooley's anemia, e beta thalassemia, patient advocacy, pharma, PKD, Red Cell Revolution, SCD, Thal Pals, thalassemia
Friday, February 10th, 2023
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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: Blog, Events, Front Page, News, Upcoming Events, Westchester-Rockland Chapter
: Cooley's anemia, events, fundraiser, Night at the Races, rockland, rockland county, thalassemia, westchester, westchester-rockland chapter
Sunday, August 21st, 2022
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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: Blog, Front Page, News, Patients in the News
: Board of Directors, Maria Hadjidemetriou, Maybelline, patient, patient profile, patient stories, Thalassaemia International Federation, thalassemia, TIF
Wednesday, August 17th, 2022
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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: Blog, Front Page, Medical Research, News
: beta-thalassemia, bluebird bio, Clinical Trials in Thalassemia Cell and Gene Therapy, Cooley's anemia, fda, gene therapy, pharma, thalassemia, ZYNTEGLO
Thursday, March 2nd, 2017
March 2, 2017- CAF launched our “Volunteer Spotlight” Series last year to highlight the stories of some of the many selfless volunteers who play a major role in making our work possible. We are truly grateful for all of the love and heart-felt effort each of our volunteers puts into organizing awareness events, blood drives […]
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: Blog, News, Staten Island Chapter
: spotlight, Volunteer Spotlight
Tuesday, February 21st, 2017
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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: Blog, Patients in the News
: #thrivingwiththal, Lisa Guidice, patient, patient profile