May 28, 2013 – CAF has long been a champion of medical research which explores potential curative approaches to thalassemia. The Foundation has been a fierce, proactive advocate with government agencies and private sources on the need for increased funding for gene therapy and other stem cell-based initiatives. Our voice has been one of the […]
May 14, 2013 – This year’s CAF Patient~Family Conference is June 28-30 in Philadelphia. (Click here for details.) What’s the Conference like? We asked Trinayani Christiansen, who attended last year’s Conference, a few questions about her experience. CAF: How many Patient-Family Conferences have you attended? Trinayani: Last summer (2012) was my first Conference. I was […]
May 14, 2013 – A big shout out to Gabriel Theophanous, President of the UK Thalassaemia Society, for competing in his second Virgin London Marathon – and for shaving 30 minutes off his past time! This is a tremendous achievement and demonstrates once again that advances in treatment are helping more people with thalassemia meet and […]
May 14, 2013 – Dr. Renzo Galanello, an international expert in the field of thalassemia, passed away it was announced on May 13. In a letter, the Thalassaemia International Federation wrote the following: The world of Thalassaemia, doctors, scientists and the global patients community, have today been informed about the premature death of Professor Renzo […]
May 14, 2013 – Although there have been great advances in recent years, liver complications are still a common issue for many with thalassemia. What can a person with thalassemia do to prevent liver issues? You can read more about liver issues in thalassemia by clicking here. What should be part of your Annual Comprehensive […]
May 1, 2013 – The deadline for applying for one of the 2013 Sultan Bin Khalifa International Thalassemia Awards,established by H.H. Dr. Sheikh Sultan Bin Khalifa Al Nahyan in partnership with the Thalassaemia International Federation, is June 15. The Awards are intended to recognize outstanding contributions in thalassemia by medical professionals, researchers, patients, parents and organizations. […]
April 30, 2013 – The medical journal Pediatric Blood and Cancer published online on April 23 a study entitled “The Palatability and Tolerability of Deferasirox Taken With Different Beverages or Food.” This is known to many in the thalassemia community as “the Exjade food study;” as the official title suggests, it looks at the option […]
Save the date! The CAF 2014 Patient~Family Conference will be held the weekend of June 20-22 in Chicago. Check back here soon for more information.
April 11, 2013 – “I would like to encourage everyone to participate in the Care Walk in even the smallest fashion because you may not know the impact you could be making for future generations.” So says Chi Pham, who along with Faye Lam and several other DC area supporters is organizing this year’s “Team […]
April 10, 2013 – The Cooley’s Anemia Foundation (CAF) has been a part of a steering committee with Centric Health Resources, the Patient Centered Health Management® organization that dispenses Ferriprox, to help develop education materials and opportunities to increase treatment compliance. One of the exciting new opportunities that Centric has asked CAF to continue to help them […]
