أوراق الموقف

يشارك الاتحاد الدولي للثلاسيميا بنشاط في عملية إعداد أوراق الموقف حول القضايا الرئيسية التي تهم مرضى الثلاسيميا ، والسعي للحفاظ على وتحسين نوعية وجودة حياتهم والحصول على العلاج.

وتأتي صياغة كل ورقة موقف من بعد فترة كبيرة من البحث المكثف والمشورة مع أعضائنا حول العالم. عند الانتهاء ، يتم توزيع أوراق الموقف على أصحاب المصلحة الرئيسيين والسلطات الصحية على المستوى الوطني والإقليمي والدولي بهدف تنفيذ الإجراءات اللازمة لمعالجة القضية المطروحة.

علاوة على ذلك، فإن البيانات يتم توزيعها فيما بين مهنيي الصحة في شبكة الاتحاد الدولي للثلاسيميا العالمية، والأهم، إنه يتم توزيعها على الجمعيات المعنية بالمرض حول العالم، وذلك بغية تشجيع مناصري المرضى على وتطوير صيغة حوار بناء مع السلطات الصحية الوطنية التابعيين لها، والمجتمعات الصحية، والمؤسسات البحثية، وجهات صناعة الأدوية، للدعوة إلى تنفيذ ما ورد في ورقة الموقف التي تم تقديمها.

شاهد أيضا:

تعريفات أساسية في مجالات تهم الاتحاد  تقرير: استخدام الأدوية الجنيسة/ المكافئة لعلاج الثلاسيميا TIF’s positions in a nutshell

We invite you to read our Position Papers found below:

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TIF Statement on the EU Regulation for Blood, Tissues and Cells

The Thalassaemia International Federation (TIF) welcomes the European Commission's proposal on the new EU Regulation for Blood, Tissues and Cells as a highly significant policy step towards improving the protection and safety of blood donors and recipients within and across the EU territory and increasing patient access to innovative transfusion and transplant therapies.

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Position Statement: Demanding Access to Existing and Upcoming Gene Therapies for Beta Thalassaemia

The Thalassaemia International Federation (TIF) is expressing its grave disappointment over the recent announcement of Bluebird Bio, concerning the “wind-down” of its operations in Europe and the exclusive disposal of its gene therapy for beta thalassaemia (Zynteglo™) in the United States.

 

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Position Statement: Addressing Blood Supply Issues Linked To COVID-19 Vaccination Deferral Times

In this Position Statement, TIF wishes to address and clarify to the extent possible basic questions that oftentimes concern blood donors with regard to Covid-19 vaccination and blood donation.

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Position Statement: Accessibility of Gene Therapy for Thalassaemia

Gene therapy has been a long-awaited scientific development for thalassaemia patients and has given
hope, optimism, and opened new horizons. It is imperative for ground-breaking scientific advances and innovative therapies to be sufficiently recognized by national health authorities in conjunction with not only an understanding of the impact of the disease on the daily lives of patients and their families but also in regards to the actual cost-of-illness for healthcare providers.

 

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EU Policy Recommendations for Thalassaemia and Sickle Cell Disease

This document has been drafted in the context of the activities of the TIF multiannual programme (2018-2021),  “Thalassaemia In Action” (THALIA). Its aim is to provide an overview of the multiple factors that impact the lives of people with Thalassemia and Sickle Cell Disease living in the European Union, and highlight specific recommendations addressed to policymakers in order to address key challenges, unmet needs and policy gaps and ultimately improve the patients’ health and lives.

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Position Statement: COVID-19 Vaccines & Haemoglobin Disorders

In view of the plans made by national health authorities in every country across the world for the widespread vaccination of individuals against the SARS-CoV-2 virus, TIF herein presents the Federation’s position about the vaccination of patients with haemoglobin disorders against SARS-CoV-2.

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Position Statement: COVID-19 & Thalassaemia

Many patients with haemoglobinopathies, including thalassaemia and sickle cell disease, are at increased risk of developing severe complications from the coronavirus disease 2019 (COVID‐19). In this Position Statement, TIF reflects on general considerations and levels of risk for patients, the adaptation of haemoglobinopathy care, the blood transfusions safety and the blood supply challenges.

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Position Statement: The Use of DEHP Plasticizers in Medical Devices

The safety concerns linked to the use of DEHP plasticizers, a manufactured chemical common in blood bags and PVC intravenous fluid sets, has been explored, and even questioned, by many in recent years. TIF's Statement follows the publication of the guidelines prepared by the European Commission’s Scientific Committee on Health, Environment and Emerging Risks (SCHEER) in June 2019 and the consequent decision to gradually withdraw products made with this plasticizer from 2023, and replace it with alternative plasticizers.

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Position Statement: COVID-19 & Inclusion of Thalassaemia and SCD Patients in the High-Risk Population

Through this Position Statement, TIF encourages National Health Authorities of every country across every region of the world, in the context of their national fight against the COVID-19 pandemic, to promote and adopt a series of policies in relation to the protection of the health and lives of individuals with haemoglobin disorders.

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ورقة الموقف: حماية سلامة الدم

بالإضافة إلى التركيز الذي وضعه الاتحاد الدولي للثلاسيميا على موضوع الدم في برنامجه التعليمي ، أعد الاتحاد ونشر ووزع ورقة موقف بعنوان "حماية سلامة الدم". تشكل ورقة الموقف الحالية جزءًا من مجموعة من الأوراق المماثلة ، التي ينشرها الاتحاد الدولي للثلاسيميا بانتظام من أجل إبراز وتوضيح موقفها من الأمور بالغة الأهمية للإدارة علاج مرضي الثلاسيميا ، وبالتالي صحة ونوعية وجودة حياة المرضى على مستوى العالم.

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