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NEW 3rd Pan-European Conference on Haemoglobinopathies and Rare Anaemias:
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NEW 1st Pan-Asian Conference on Haemoglobinopathies:
Read Now:
- the Final Report
- the Conclusions and Recommendations
- the Declaration -
NEW TIF POSITION PAPER: Information to Patients
Meaningful involvement of patients relies largely on a key prerequisite: that the patients are kept well and reliably informed at all times so that the they can contribute actively and their perspective is taken into serious consideration by competent authorities. Promotion of equal access of every patient to information governed by core quality principles, and which makes them fully knowledgeable on every aspect related to their health, quality of life and expectations, constitutes the area, where TIF has been focusing considerable attention for long and where it needs to further invest in time and resources
Read more…
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GREAT NEWS: New Gene Therapy Approach Developed for Red Blood Cell Disorders
Researchers say their method tested in human cells may offer the first viable Approach to genre transfer in sickle cell anemia.
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OPEN CALL FOR APPLICATIONS: MAY 2012
The Sultan Bin Khalifa International Thalassaemia Award in collaboration with Thalassaemia International Federation.
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8th of MAY ACTIVITIES 2012 – INTERNATIONAL THALASSAEMIA DAY
The theme for this year’s International Thalassaemia Day is “Patients Rights – Revisited”. The Thalassaemia International Federation will organise a Press Conference on this day to promote the rights of patients in Cyprus. Representatives from various patient support groups will join hands with TIF and have the opportunity to share their own message to the public.
“ …Dear friends, let us join hands – Unity Is Our Strength – and let is focus this year for the 8th of May activities on “Patients Rights”...On behalf of TIF, I urge every patient to look and learn about his/her rights, how these are protected and respected in their country, to ensure that they are continuously and accurately informed through their authorities, national patient associations, TIF and accredited sides on the internet…I urge you to join hands in a unified effort to overcome the barrier of ignorance, misinformation and misguidance on what your Rights are…”
“…Join TIF on this 8th of May theme: “Patients Rights-Revisited” and organise events, workshops, discussions, print educational material, investigate and write to TIF how patients’ rights are protected in your country or region…”
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TIF POSITION PAPER: Patients’ Rights – Patients’ Safety - Counterfeit Medicines – A global threat
“…A plethora of factors are known today to impact the safety of patients and a major one is related to the use of counterfeit medicines. It is useful for the objective of this position paper, to start by making patients more aware and familiar with some relevant terminology such as: (i) branded, innovative, reference, new medicinal drugs, (ii) generic or copy drugs and (iii) bio-similar or biological drugs*…. As patients it is essential to be aware of OUR responsibilities in addition to those of the others such as health authorities/organisations and regulatory bodies. Patients should KNOW what to look for, what to ask for and what to expect with regard to medicinal products...”
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TIF POSITION PAPER: Addressing the Management of Non-Transfusion Dependent Thalassaemias (NTDT)
“…The NTDTs have been long thought of as forms of thalassaemia with milder phenotypes in which patients have a milder anaemia compared to β-thalassaemia major and require medical care much later in life. This previous understanding has hampered efforts to provide adequate treatment for this patient population. Knowledge of the molecular and pathophysiological mechanisms underlying NTDT remained for many decades limited and their clinical and public health importance remained largely unrecognised by national and international health authorities and the global medical community… TIF through this position paper is aiming to underscore the immense importance of early proactive provision of medical care to patients with NTDT including transfusion, monitoring and treatment of iron overload aiming to prevent the serious complications related to iron and which prevent these patients from living a normal and productive life…”
