Advocacy Welcome

Welcome to our ADVOCACY homepage. This section draws attention to priority issues around anemia where we need public support.

Help Support Patients Receiving Blood Transfusions to have access to the best treatment options for iron chelation.

Watch three testimonial videos to learn more about how vital it is for patients to have access to oral chelation options.

Winnie's Story (link to YouTube video)

A Family's Story (link to YouTube video)

Nesrin's Story (link to YouTube video)

Your voice of support is urgently needed to assure that patients dependent on transfusions in Canada have access to the best treatment options for iron overload.Ontario Residents click here / All other provinces click here

Premature Deaths among Young Adult Thalassemia Patients

On May 4, 2004 the Thalassemia Foundation and Anemia Institute for Research & Education held a press conference to call for action in response to the premature deaths of young adults with thalassemia. All of these have taken place in the Toronto area. Many could have been avoided. The lack of appropriate funding for thalassemia care poses a continued risk to the entire thalassemia community.

Click here to read the press release from May 4, 2004.

On July 13, 2004, The Thalassemia Foundation & Anemia Institute co-hosted a full-day thalassemia symposium which brought together physicians, nurses, patients, and international experts on thalassemia. The symposium was attended by Ontario MPP Dr. Kuldip Kular and a representative from the Ontario Ministry of Health.

The Symposium was convened to achieve consensus on the steps which MUST be taken to protect the health of adult thalassemia patients and to relieve the dangerous situation caused by insufficient care through the current adult clinic. Click here to access the presentations made at the symposium by Dr. John Porter; Dr. Victor Blanchette; Dr. Ian Quirt; Josephine Sirna, and Dr. Nancy Olivieri.