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.
May 12, 2015 – The National Heart, Lung and Blood Institute is seeking input from the medical and patient communities for their Strategic Visioning Process. We encourage members of the U.S. thalassemia community to participate to help ensure that the needs of the thalassemia community are heard and considered as the NHLBI makes its plans […]
May 1, 2015 – The Cooley’s Anemia Advocacy Forum (CAAF) is a Cooley’s Anemia Foundation project aimed at helping thalassemia patients and families learn how to make their voices heard on federal issues of importance to the thalassemia community. (A brochure about CAAF can be downloaded by clicking here.) Following is a report from Lyle Dennis […]
April 28, 2015 – ABC News Channel 7 in the New York metro area ran a wonderful story on its 4:00 news broadcast about thalassemia patient AJ Vigliotti. The video can be viewed by clicking below.
April 25, 2015 – The Lighthouse at Chelsea Piers will be sporting a special glow on June 4 as CAF descends upon the venue to hold its 2015 Gala! “This year’s Gala looks to be a very special evening,” says Anthony J. Viola, CAF National President. “As always, the Committee has done sterling work, going […]
April 22, 2015 – The World Health Organization (WHO) will present the Dr LEE Jong-wook Memorial Prize for Public Health to the Thalassaemia International Federation (TIF) at 68th World Health Assembly on May 21 in Geneva, Switzerland. The prize is one of the most prestigious honors given by WHO and is given to nongovernmental organizations […]
April 21, 2015 – The agenda for CAF’s 2015 Patient-Family Conference is available and can be downloaded by clicking here. For 2015, this always-anticipated annual event will be held June 26-28 at the Wyndham Hamilton Park Hotel and Conference Center in Florham Park, NJ. Entitled “Celebrating Self-Empowerment,” the 2015 Conference is a unique opportunity for […]
April 1, 2015 – A Care Walk will be held on May 2 in West Babylon. One of the teams participating is Team Zayna, named in memory of Zayna Connolly, a child with thalassemia who passed away earlier this year. Below, Sarah Baqueri Connolly speaks about her and her husband’s involvement with Care Walk this […]
March 31, 2015 – The Cooley’s Anemia Advocacy Forum (CAAF) is a Cooley’s Anemia Foundation project aimed at helping thalassemia patients and families learn how to make their voices heard on federal issues of importance to the thalassemia community. (A brochure about CAAF can be downloaded by clicking here.) Following is a report from Lyle Dennis […]
April 1, 2015 – Novartis announced that the Food and Drug Administration (FDA) has approved Jadenu (deferasirox) tablets for the treatment of chronic iron overload due to blood transfusions in patients 2 years and older, and for chronic iron overload in non-transfusion-dependent thalassemia syndromes (NTDT) in patients 10 years and older. Jadenu is a new […]
March 27, 2015 – Registration is now open for CAF’s 2015 Patient~Family Conference! For 2015, this always-anticipated annual event will be held June 26-28 at the Wyndham Hamilton Park Hotel and Conference Center in Florham Park, NJ. Entitled “Celebrating Self-Empowerment,” the 2015 Conference is a unique opportunity for U.S. individuals with thalassemia and their family […]
