I am a person with thalassemia

Welcome to the Cooley’s Anemia Foundation website!  The Cooley’s Anemia Foundation  exists to help individuals with thalassemia meet the challenges that are associated with living with this blood disorder.  (You can read about our mission and purpose by clicking here.)

Below are some links that may be of interest to individuals with thalassemia.

About Thalassemia

Clinical Trials in Thalassemia

Blood Safety

Thalassemia Treatment Centers

Downloadable Publications

News items of interest

Patient Profile: A New Life

June 20, 2016 – 14 years ago CAF ran a story about two siblings (Mia and Teddy Xyloportas) whose thalassemia was cured through a bone marrow transplant. They were fortunate that their sister Marcella was a match for both of them and was able to donate bone marrow for a successful BMT. (You can download […]

Patient Profile: Yasmeen Anis, “Never Ever Give Up”

May 9, 2016 – Yasmeen Anis, a person with thalassemia, shares her personal story below. CAF thanks Yasmeen for letting us share this story with you. NEGU – Never Ever Give Up – is something Yasmeen’s best friend told her one day, and it’s a motto that she’s kept since that day. Diagnosed with beta […]

Registration Is Open for 2016 Patient-Family Conference!

March 7, 2016 – Registration is now open for CAF’s 2016 Patient-Family Conference!  For 2016, this always-anticipated annual event will be held July  8-10 at the Hilton San Diego Mission Valley in San Diego, CA.  Entitled “Reaching New Heights,” the 2016 Conference is a unique opportunity for U.S. individuals with thalassemia and their family members (parents, […]

Phase 1 Trial of Hepcidin Formulation is Enrolling

March 6, 2015 – San Diego-based La Jolla Pharmaceutical Company is currently seeking qualified patients for consideration in their trial in Patients at Risk for Iron Overload using its novel formulation of hepcidin (LJPC-401). Hepcidin, an endogenous peptide hormone, is a naturally occurring regulator of iron absorption and distribution. Manipulation of hepcidin has the potential to […]

Why The Daileys Care Walk: Thalassemia Doesn’t Define You

Throughout this Care Walk season, we will be highlighting stories of some of the amazing people whose efforts make this event a success for the Cooley’s Anemia Foundation and all the patients we serve. With so many Care Walks taking place on the same day, we hope that these stories will invite us all in […]

Aaron Cheng Selected for 2015 CAF-ApoPharma Distinguished Scholar Award

January 5, 2016- The Cooley’s Anemia Foundation is pleased to announce that Aaron Cheng has been named recipient of the 2015 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. Aaron is currently […]

Nutrition 1: Three Simple Suggestions for a Healthy Diet

December 16, 2015 – In the article below, Ellen Fung, PhD, RD of UCSF Benioff Children’s Hospital Oakland and Farah Sultan, RD of McMaster University, share some nutritional information for people with thalassemia. One of the most common questions we are asked as nutritionists is, “What should I be eating?” In many ways, the diet for […]

Interview: Dr. Maria Domenica Cappellini on Clinical Features of Thalassemia

  Dr. Maria Domenica Cappellini presented at the 10th Cooley’s Anemia Symposium on “Clinical Features of Thalassemia.” CAF spoke with her at the Symposium about this topic; that interview can be viewed above. The range of topics presented over the course of the Symposium was impressive and indicates just how active and vital the thalassemia […]

Hematology Meeting Presents Information of Interest for Thalassemia

December 9, 2015 – The American Society of Hematology (ASH) held its annual meeting from Dec. 4 – 8 in Orlando, FL, and CAF was once again there to distribute information, meet with clinicians and researchers and attend educational and scientific meetings of relevance to the thalassemia community. Below is information on a few of […]

Interview: Ellen Fung on Nutrition and Thalassemia

Dr. Ellen Fung presented at the 10th Cooley’s Anemia Symposium on “Nutrition for Patients with Thalassemia.” CAF spoke with her at the Symposium about this topic; that interview can be viewed above. The range of topics presented over the course of the Symposium was impressive and indicates just how active and vital the thalassemia field […]