4th Thalassemia Support Foundation Conference

PDF of Invitation: 4th Thalassemia Support Foundation Conference Invitation

4th Thalassemia Support Foundation (TSF) Conference

Saturday -  October 6, 2012

Children’s Hospital Oakland Research Institute (CHORI)

5700 Martin Luther King Jr. Way
Oakland, CA  94609

(Down the street from CHRCO) 

  Important Note

Another Conference will be held at the Children’s Hospital Los Angeles in April 2013, which will cover the same topics and may have the same speakers/sessions as this conference. 

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Shades of Gray

by Marientina Gotsis

I was born with beta thalassemia trait. My father carries the gene. My brother carries the gene. Half of my dad’s family also carries the gene but my parents did not know my father had thalassemia until they had to test in order to get a marriage license. This was before separation of church and state in Greece and the church required genetic screening. The mystery behind my father’s endless craving for steak and sleep was solved.

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2011 Thalassemia Action Group Conference at Disneyland

TAG Patient/Parent Conference
Disneyland Paradise Pier Hotel
Anaheim, California
June 24 – 25, 2011

A unique way to gather important new information about thalassemia while meeting other patients and parents who can relate to the specific challenges associated with thalassemia.

For more information, visit: http://tinyurl.com/4doxrhb

Thalassemia Informational Session at Ceders Sinai Hospital

The information may be very important for you, particularly if your family originates from the Mediterranean Region, North Africa, Turkey, the Middle East, India, Asia and New Guinea.
Dr. Vasili Berdoukas, an international expert on thalassemia and related disorders will present information on the condition, how it is inherited and prevented.

Cedars Sinai Hospital Harvey Morse Auditorium
Tuesday, May 24th 2011 between 7-9pm
Free of charge. Refreshments will be served. All welcome.
Seating Limited – RSVP requested.


3rd Thalassemia Support Foundation Conference

The 3rd Thalassemia Support Foundation Conference was held at the beautiful Beverly Garland hotel located only a mile away from Universal Studios. This conference is directed toward Thalassemia patients, parents, and loved ones, as well as members of the medical community. The focus of the conference is to learn about recent advancements in Thalassemia care and to provide a unique opportunity to meet others who are affected by Thalassemia.

TSF Helps Fund Thalassemia Retreat

The annual thalassemia retreat was held on November 14-16th in Russian River, California. Twenty five, thalassemia patients, some of them joining for the first time, (including people from Alaska and Ohio) and their spouses, significant others, children, and friends attended the retreat and enjoyed a weekend of bonding with friends, both old and new; sharing culinary talents; playing games; and sharing personal stories while giving and gaining support. Read more of this post

Patient’s Perpective: Uncommon Threads

by Abby Thorelson 

Whether you are meeting a new thalassemia patient for the first time or picking up where you left off with one from last year, there is an instant deep connection that ties us to each other. Some may see it as an affliction, but I am beginning to see it as a special mark that inspires us to strive to be extraordinary rather than to settle for mediocrity.

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From a Parent’s Perspective

by Vincie DiLorenzo 

Paul was diagnosed with thalassemia major when he was four months old. At that time, he looked pale, but otherwise appeared to be healthy. Blood tests would prove otherwise.

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TSF Helps Fund Children’s Hospital Oakland Holiday Party

On December 14, 2008, 175 patients and families with thalassemia, friends of the program, and staff, gathered together for the annual Thalassemia Holiday Party at Children’s Hospital and Research Center Oakland. The Outpatient Center atrium was transformed into Little Italy to celebrate this year’s theme “Viva Italia.” Read more of this post

Thalassemia Patients Can Receive $100 for Online Discussion

Panel Intelligence is looking for Thalassemia Patients in the United Kingdom, France, Germany, Italy and Spain to join an online discussion to explore opportunities for better patient care and communication. Read more of this post