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

Neufeld to Depart Medical Advisory Board, Kwiatkowski to Assume Chairmanship

January 30, 2017 – The Cooley’s Anemia Foundation is announcing a change in the Chairmanship of its Medical Advisory Board (MAB). Ellis Neufeld, MD, PhD, who has been Chair of the MAB since 2009, is stepping down as of March 1. Janet Kwiatkowski, MD, MSCE will be assuming the Chairmanship of this important Board. Dr. […]

Survey for Parents Who Have Adopted a Child with Thalassemia

January 3, 2017 – The Thalassemia Nurses and Social Workers Committee is conducting a survey of families with an adopted child with thalassemia. If your family includes a child or children with thalassemia who are adopted, we hope you will participate in this survey to help the Committee obtain some basic information. You can click […]

Slides from 2016 Patient-Family Conference

August 29, 2016 – This year’s Patient-Family Conference was a notable success, with much valuable information presented over the course of the two days. CAF is pleased to make available in pdf form some of the information presented at the Conference. In order to download the pdfs, click on the title of each presentation (below). Nutrition for […]

Reminders About Infection and Thalassemia

July 28, 2016 – The recent death of an adult with thalassemia, apparently from sepsis (overwhelming bacterial infection) has led to some vigorous discussions in the thalassemia community.  The discussions reveal some of the clear advantages, but also disadvantages, of social media.  An advantage is that word about important events spreads rapidly. Unfortunately, news spreads […]

Q&A Concerning Thalassemia and Renal Fanconi Syndrome

July 28, 2016 – CAF recently learned of a thalassemia patient with a kidney problem called Renal Fanconi Syndrome, likely due to deferasirox.  We would like to answer several questions that often arise about this problem.  Dr. Ellis Neufeld, Chair of CAF’s Medical Advisory Board, has provided answers to the following questions. What is Renal Fanconi Syndrome?  […]

Patient Applications Being Accepted for 2016 CAF-ApoPharma Distinguished Scholar Award

July 10, 2016 – The Cooley’s Anemia Foundation is accepting applications from individuals with thalassemia for the 2016 CAF ApoPharma Distinguished Scholar Award. The CAF-ApoPharma Distinguished Scholar Award, which was established in 2014, is made possible through a grant from pharmaceutical manufacturer ApoPharma. CAF will award up to two scholarships to a U.S. citizen(s) with […]

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 […]