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Author Archives: tifwp

A NORMAL LIFE by Miriam Lauria

  „My name is Miriam and I live in the province of Matera, Italy. I have been suffering from thalassaemia major since birth. At the age of one year I began to receive blood transfusions every 15/18 days. Many people have this type of disease in a more or less ...

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LOVING LIFE ENOUGH by Mary Manachi

This is the story of the late Mrs. Mary Manachi from New Jersey, USA, who lost 3 children from thalassaemia back in the 50’s-60’s, when no drugs and medical treatments were available to help prevent their death at a fairly young age. Mrs. Manachi passed away a few years ago, ...

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Capacity, Competence & Confidence: Building the three CS for patients’ organizations – Hamburg, Germany – 12-13 October 2019

Aiming at the continuous training of patients on issues relevant to the management of thalassaemia and other haemoglobinopathies, as well as the improvement of existing conditions and services provided for the support and care of patients with such diseases in Europe, TIF organized a multidisciplinary Capacity Building Workshop aimed at ...

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TIF’s Patient Advocacy Group for Thalassaemia and Sickle Cell Disease (T-PAG)

      IS BETA – THALASSAEMIA OR SICKLE CELL DISEASE IN YOUR PIPELINE?   LEARN ABOUT PATIENTS’ EXPECTATIONS, PERSPECTIVE, CHALLENGES AND BURDEN OF DISEASE BY ENGAGING WITH TIF’s INTERNATIONAL PATIENT ADVOCACY GROUP!   The Thalassaemia International Federation (TIF) is delighted to announce the establishment of TIF’s Patient Advocacy Group ...

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Rapamycin

  Update: 25 November 2019 No update available.   Update: 27 September 2019 Rapamycin, a drug widely used for almost 20 years to protect organ transplant patients, has been found to reduce, in mice, the build up of toxic proteins that destroy red blood cells in β-thalassaemia. Investigators are moving ...

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Mitapivat (AG-348)

  Update: 25 November 2019 No update available.   Update: 27 September 2019 DRIVE PK is an ongoing global, open-label, Phase 2, safety and efficacy study evaluating Mitapivat in adults with PK deficiency who do not receive regular transfusions. It is the first clinical trial in adults with PK deficiency. ...

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FIGHTING WITH HOPE by Bidhan Sarkar

Winner Story #3 – International Thalassaemia Day 2019   “I was born in a small village in Bangladesh. Four years later, one renowned child specialist diagnosed me as E-beta thalassaemia and gave a prognosis that my life span would be 15 to 20 years old. My parents at that time ...

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LIFE WITH & WITHOUT THALASSAEMIA by Diane Abou Hamia

Winner Story #2 – International Thalassaemia Day 2019   “I had been diagnosed with thalassaemia major at the age of 3 months and had undergone blood transfusions for 24 years! But four years ago, I had undergone a bone marrow transplant and had recovered after the hard time I had ...

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