Other Disease & Disease Group Organisations

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IAPO is a global alliance representing patients across all disease areas and promoting patient-centered healthcare around the world. Given that the period in which we live is one of increasing globalization, health decisions are being made at every level and important healthcare issues are increasingly crossing national and regional borders, thus making the public health issues now global. IAPO works closely with the patient community in order to maximize the patient community’s impact through capacity building, and builds cross-sector alliances with the medical community, policy makers, academics, researchers and industry representatives to make patients the centre of any health system. Moreover, IAPO has initiated a direct collaboration with WHO as an NGO, representing the patients’ voice on counterfeit medicines, non-communicable diseases and patient-centered healthcare. TIF, being a patient-driven organization, is a member of IAPO with our goals overlapping in the areas of patients’ rights to quality and tailor-made treatment.

HOW TIF WORKS WITH IAPO

Our affiliation with the International Alliance of Patients’ Organisations (IAPO) helps to consolidate TIF’s collaboration with WHO headquarters on the issues of counterfeit medicines, non-communicable diseases and patient-centred healthcare.

IAPO’s Declaration on Patient-Centred Healthcare can be found here

More information about IAPO, please feel free to visit IAPO’s website directly.

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EGAN – the European Patients’ Network for Medical Research and Health – is a dynamic, patient-driven collaboration of patient organisations that work together for the prevention and for the development in the treatment of genetic, multifactorial and congenital disorders. EGAN focuses attention on the ethical, legal, psycho-social and cultural implications and on their impact on society at large, injecting a patient-focused perspective into political and societal debate on these issues.

Furthermore, a primary target of EGAN is the empowerment of individuals, families and patient organisations, enabling them to make timely and informed decisions about family planning and lifestyle issues.

HOW TIF WORKS WITH EGAN

TIF enjoys a fruitful partnership with EGAN, as thalassaemia is a genetic disease whose patients and their representatives should be actively involved in the development of therapies and in the sharing of best practice methods of medical genetic services.

More information about this network can be found at its official website.

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The European Liver Patients Association (ELPA) aims to promote and protect the interests of people with liver disease by distributing information with relation to the global epidemiology of liver disease, thus advocating for awareness campaigns for the purposes of prevention and sharing of experiences of successful initiatives.

Furthtermore, ELPA works with the EU and with professional bodies such as EASL, to ensure that treatment and care are harmonised across Europe to the highest standards.

HOW TIF WORKS WITH ELPA

TIF has embarked on collaboration with ELPA in light of the recent developments in the treatment of Chronic Hepatitis C infection in patients with thalassaemia and has developed a position paper that promotes the very principles that ELPA stands for.

You can read TIF’s position paper on the treatment of Chronic Hepatitis C in our Advocacy & Policy issues section.

Read ELPA’s information leaflet on Hepatitis C: Understanding a Silent Killer

Euro Hepatitis Index 2012 is now published.

For more information about ELPA, please visit the official website.

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The European Organization for Rare Diseases (EURORDIS) is a non-governmental, patient-driven alliance of patient organisations and individuals who are active in the field of rare diseases. EURORDIS is dedicated to improving the quality of life of all people living with rare diseases in Europe. Currently, EURORDIS represents more than 30 million rare disease patients in Europe, from 571 organisations in 52 different countries (15 being outside Europe), covering more than 4,000 rare diseases.

EURORDIS aims at improving the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and drug development, networking of patient groups, raising awareness and other actions designed to fight against the impact of rare diseases on the lives of patients and their families.

HOW TIF WORKS WITH EURORDIS

TIF maintains a close collaboration with, and is an active member of EURORDIS, since thalassaemia and other haemoglobin disorders are defined as Rare Diseases in Europe.

The official website of EURORDIS provides more information about its work.

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The European Platform for Patients’ Organizations, Science and Industry (EPPOSI) is a non-governmental, partnership-based and multi-stakeholder think tank whose goal is to work on the latest developments in European health policy-making, providing members and the wider public with quality independent research, capacity-building as well as knowledge-exchange and dissemination, with the aim of bridging the gap between innovation and improving public health outcomes. In order to fulfil this mission and build on its established, unique, citizen-centric and multi-constituency approach, EPPOSI pursues a consensus-driven methodology, balancing the opinions of the different stakeholder groups of its membership, i.e. patients’ organisations, science and industry. With its unique multi-stakeholder membership and approach, EPPOSI focuses on four research areas, namely Chronic Conditions Management, Health Technology Assessment, Innovation in Healthcare and Rare Diseases.

HOW TIF WORKS WITH EPPOSI

TIF, as the voice of patients with thalassaemia in this platform, looks towards contributing actively to meetings and consultations focusing particularly on the management of thalassaemia as a chronic disorder by national health systems and on highlighting the importance of prevention but also of the timely and appropriate treatment for patients, thus relieving the public health burden and resulting in a positive health technology assessment.

More information about EPPOSI can be found at its official website.

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The Drug Information Association (DIA) is a global, non-governmental association that provides knowledge and information on medical product development across all disciplines. Moreover, DIA provides a neutral forum that fosters knowledge exchange, networking and collaboration through quality education and training programs, volunteerism, and targeted publications distributed to regulatory agencies, academia, industry professionals and patient advocates.

HOW TIF WORKS WITH THE DIA

TIF has recently initiated collaboration with the DIA with the prospective to create a strong partnership through which our patient members can be informed on the development of new and innovative medicinal products.

More information about DIA can be found at its official website.

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The World Hepatitis Alliance (WHA) is an international umbrella of patient groups working in the field of viral hepatitis. It is patient-led and patient-driven, representing the global voice for the 500 million people worldwide living with chronic viral hepatitis B or C. The WHA is active in the areas of prevention, care, support and access to treatment, with the ultimate goal to work with governments to eradicate these diseases. Furthermore, raising awareness of chronic viral hepatitis is one of the fundamental activities of this organization and in particular the coordination of global activities for World Hepatitis Day on 28 July each year.

HOW TIF WORKS WITH THE WHA

TIF has recently begun a close collaboration with the WHA in light of the numbers of the thalassaemia patients infected with HCV and HBV across the world.

Please feel free to access the official website of WHA for more information.

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The Cyprus Alliance for Rare Disorders (C.A.R.D.) is a non-profit organization founded in June 2010. Its purpose is to provide a dynamic and unified voice to approximately 60,000 patients with rare conditions residing in Cyprus.

There are several problems faced by patients with rare diseases in Cyprus, but also worldwide. Usually the problems are unique to each disorder, but often there are observations of common problems that there are between disorders. Consequently, these problems affect the quality of life of the patients because delayed diagnosis which may worsen the patient's pain or may even lead to disability.  Additionally, as a result of restricted funding from health-related institutions and pharmaceutical companies focusing on rare diseases, medical research and development of new drugs is minimal.

Thus, it was deemed necessary to create an organization in Cyprus, to advocate and address the concerns and needs of patients with rare diseases. After extensive consultations between various organizations of patients with rare diseases, Cyprus Alliance for Rare Diseases was founded!

HOW TIF WORKS WITH THE C.A.R.D.

TIF constituted one of C.A.R.D.’s founding members and frequently represents rare diseases in high-level meetings.

For further details visit the C.A.R.D. official website