person with thalassemia

Registration Now Open for 2017 Patient-Family Conference

Monday, March 27th, 2017

March 27, 2017 – Registration is now open for CAF’s 2017 Patient-Family Conference!  This year’s Conference will be held from July  7-9 at the College Park Marriott Hotel and Conference in Hyattsville, MD.  The 2017 Patient-Family Conference is a unique opportunity for U.S. individuals with thalassemia and their family members (parents, siblings, spouses, etc.)  to meet other […]

Camps for Children With Thalassemia

Thursday, March 2nd, 2017

March 2, 2017- CAF is happy to provide information about camps for children with serious medical conditions including thalassemia. This is provided for informational purposes so that parents/patients can know about possible options they may wish to consider. CAF does not endorse one camp over another. The Painted Turtle The Painted Turtle is a camp […]

Neufeld to Depart Medical Advisory Board, Kwiatkowski to Assume Chairmanship

Tuesday, January 31st, 2017

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

Tuesday, January 3rd, 2017

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

Tuesday, August 30th, 2016

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

Thursday, July 28th, 2016

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

Thursday, July 28th, 2016

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

Sunday, July 10th, 2016

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

Tuesday, June 21st, 2016

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”

Tuesday, May 10th, 2016

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 […]