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

Deadline for Distinguished Scholar Award Applications Extended to October 15

September 16, 2014 – The Cooley’s Anemia Foundation is extending the application deadline for its first CAF-ApoPharma Distinguished Scholar Award to October 15, 2014. The new scholarship program for is U.S. individuals with a clinically significant form of thalassemia who have chosen to pursue postgraduate doctoral level studies in medicine or science. The award is [...]

Thalassemia Patient Authors “Transfusion: A Patient Survival Guide”

September 9, 2014 – Josephine Bila, an individual with thalassemia, has written a book, “Transfusion: A Patient Survival Guide.” CAF speaks with Jo about this project below. CAF: Tell us a little about “Transfusion: A Patient Survival Guide.”  What motivated you to write it, what is it about, etc.? Jo:  I was born with beta [...]

CAF Works to Enhance HRSA’s Focus on Thalassemia

September 2, 2014 – Through a series of meetings, phone calls, and “listening sessions,” the Cooley’s Anemia Foundation (CAF) has been working diligently for months to assure that the Health Resources and Services Administration (HRSA), which is an agency of the U.S. Department of Health and Human Services, fully understands and appreciates the complications that [...]

New Story Added to CDC Thalassemia Flickr Album

August 27, 2014 – The Centers for Disease Control and Prevention  (CDC)’s social media platform on Flickr has added a new photo and story to its “Personal Stories of People Living with Thalassemia.” The new photo and story, which focuses on Jasvinder Singh, can be viewed by clicking here.  The entire album can be accessed [...]

CAF’s $300,00 Medical Research Funding Moves Field Forward

August 25, 2014 – New explorations in gene editing. Connections between thyroid hormones and hemoglobin. Efficiency and safety in gene therapy. Using a protein to control iron. These are the ideas behind the four exciting new studies being funded by the Cooley’s Anemia Foundation this year. These new fellowships join four renewed fellowships and a [...]

TIF Holds “Living with Thalassemia” Video Challenge

August 25, 2014 – The Thalassaemia International Federation (TIF) is holding a special “Living with Thalassemia Video Challenge,” asking members of the thalassemia community to share videos about their experiences dealing with thalassemia. Participants are asked to upload a 2-5 minute video about experiences that made them feel good, hopeful or inspired.  “By sharing stories,” [...]

Presentations from 2014 CAF Patient~Family Conference

August 20, 2014 – Below are links to the slides that were used in many of the presentations from this summer’s Patient~Family Conference. Please click through to view the slides. Presentations are listed alphabetically. The CHOP-HUP Transition Program - The Philadelphia Experience Fertility in Thalassemia Gene Therapy and Other Curative Approaches Genome Editing for Thalassemia The [...]

TIF Schedules 4th Pan-European Conference

July 30, 2014 – TIF (Thalassaemia International Federation) has scheduled its 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias for November 7-9 in Athens, Greece. The Conference is held in collaboration with the Greek Thalassaemia Federation. Writing about the event on the Conference’s website (www.tif2014.org), TIF President Panos Englezos and Greek Thalassaemia Federation President Dr. [...]

Teens Lend Their Helping Hands to Fight Thalassemia

July 29, 2014 – Two amazing teen-age girls who until recently had never heard of Cooley’s anemia are now among our greatest allies in the fight against thalassemia. Amanda Rodriguez, 15, and Nairobi Mendez, 18, are friends who were living in Lodi, NJ. This spring, one of Amanda’s friends re-tweeted a post from Lisa Vigliotti [...]

Hepatitis C in Thalassemia: Q&A with Dr. Richard Ward

July 28, 2014 – The outlook for individuals living with thalassemia is better than it ever has been thanks to more choices for effective chelation. However, this brings with it medical concerns that patients previously did not face. One example of this is hepatitis C infection and the risks associated with it: liver cirrhosis (scarring) [...]