International Network for Patients’ Associations & Medical Specialists

The creation of networks of collaboration constitutes the major activity and a most valuable tool for our Federation, to obtain useful information and true facts about the health and other care services for our patients, and of course to promote its mission and objectives, which is the promoting of equal access to quality healthcare for every patient across the world.

Through such networks, close collaborations are built between and amongst health professionals and patients / parents, allowing the extension of TIF’s educational program and dissemination of its publications. Through such networks, friendships are built, difficulties, problems and concerns are identified, but also successes and experiences are shared and cherished.

lease see below the proposed structure of the International Network
  • Four (4) Regional Networks with the same general objectives, benefits and responsibilities
  • Each Regional Network will include common but also different objectives based on the needs of each region
  • Each Regional Network will form a Steering Committee (SC) and the SC of each regional network will be represented in the GLOBAL network SC.
  • The number of the members of the SC should be relatively small (up to 10) in order to be more effective (5 patients and 5 health professionals).
  • The Global Network will meet every two years during TIF’s biannual international conferences
  • The Regional Network will meet when regional conferences are taking place (also biannually)
  • If it is necessary the TIF office will organise teleconferences to address important issues of the network with the members of the SC
  • The main means of communication will be through e-mails
  • The Members of the Network will have a number of benefits (see below) and number of responsibilities (see below)
  • Members that fail to follow the responsibilities will be automatically deleted from the Network and will not be able to enjoy the benefits of the network.
  • TIF’s website will include detailed information for each regional network, its members and its activities
  • All thalassaemia associations’ members of TIF are automatically (by definition) members of the network of the region they belong to, by just completing the network registration form.
  • In order for Health professionals to become members of the network automatically, they already need to be associate members of TIF, otherwise they need to complete the membership forms
  • Receive publications from TIF
  • Support your work in your country / region
  • Priority in sponsorship programs
  • Priority in the participation of TIF’s or TIF supported educational events
  • Support to the activities and particularly the educational program at the national and regional level
  • Communicate the national, regional status/problems/success on a regular basis
  • Participate and contribute to delegation visits / field trips and other high level meetings of the Board or its advisory board, focused on promoting the effective control of haemoglobin disorders.
  • Contribute to TIF’s educational programs, including publications
  • Support all of TIF’s efforts in the region for the promotion of national country programs.

Europe

The European Network aims to address the lack of awareness, as well as the lack of unity between the relatively few patients/parents, doctors and other health professionals located and heterogeneously spread in different European countries. The expected outcomes of the formation of the Network in the medium term are:
  • Promotion and strengthening of health literacy, education of patients regarding their disease, treatment and awareness of new advancements.
  • Improved awareness among medical professionals about haemoglobin disorders, their treatment and prevention
  • Developing an accurate picture of the health services available to patients in each country and the weaknesses which need to be addressed
  • Improved epidemiological information, through the collection of data from European countries including numbers and location of patients.
  • The above two will provide an evidence base to focus TIF’s activities on the special needs of the region and to support EU and WHO efforts towards the creation of standards, services and guidelines for Hb disorders.
  • Greater awareness among patients of the existence of an international support network and peer groups in other countries and about existing policies, new developments on issues relevant to their care, their rights as patients and citizens concerning cross border health, clinical trials, registries etc.
  • Creation of new patients/parents’ support associations in European countries, and strengthening of existing ones.
  • Creation of networks of collaboration and close contacts between patients and medical professionals within and between countries.

Specific Objectives

The Network has the following specific objectives:
  • Strengthen the voice of patients with haemoglobin disorders in Europe
  • Encouraging active participation of patients in the promotion of existing policies and development of new strategies towards truly patient-centred healthcare for thalassaemia and other haemoglobin disorders across Europe
  • To share information and experiences both from the perspective of patients/parents and health professionals
  • Form a Europe-wide network with other haemoglobin disorders patients’ associations, and other disease-specific associations where appropriate, in order to create a platform for the exchange of expertise, experiences and dialogues
  • To collect information on the status of thalassaemia, its treatment and epidemiology which will allow TIF to plan activities and focus efforts where they are most needed
  • To gather evidence and data about the status of treatment, prevention, epidemiology, prevalence, incidence and location of highest clusters, and prepare reports to EURO-WHO and national health authorities
  • To improve patient information through TIF’s publications and educational events
  • To feed back information and experiences to TIF, helping TIF to plan activities and focus efforts where they are most needed as well as plan and implement future joint awareness and educational activities
  • To disseminate TIF’s educational publications about haemoglobin disorders, their epidemiology, appropriate clinical management and prevention strategies to health professionals, patients/parents and the general public

Organisation of the Network and member’s responsibilities

  • The Network will be coordinated by TIF and based in its head office in Cyprus. It will be a network of collaboration with no legal status. Patients/parents’ associations may nominate one representative and one alternate to the Network, who will undertake communications and dissemination of information to their respective communities. Health professionals will be individually represented.
  • It is envisaged that at least one annual meeting will be organised in one of the participating countries. TIF will aim to offer financial assistance to cover the attendance expenses of one patient/parent representative per country, subject to available budget.
  • Members of the Network need to commit themselves to attending the annual meeting whenever possible, to respond to email correspondence and member consultations, and to contribute to information-gathering tasks and other common activities to the best of their ability.

Become a member of the European Network

Download the application form for Health Professionals here

Download the application form for Patients/Parents & Patient Associations here

Middle East

The Middle East Network aims to address the lack of awareness, as well as the lack of unity between the patients/parents, doctors and other health professionals located and heterogeneously spread in different countries of the region. The expected outcomes of the formation of the Network in the medium term are:
  • Improved awareness and education of medical professionals about haemoglobin disorders, their treatment and prevention
  • A more accurate picture of the health services available to patients, as well as any problems concerning take-up or access
  • Improved epidemiological information, through collecting data from Middle Eastern countries including numbers and location of patients.
  • The above two will provide an evidence base to focus TIF’s activities on the special needs of the region and to support WHO efforts towards the creation of regulations and guidelines for Hb disorders.
  • Greater awareness among patients of the existence of an international support network and peer groups in other countries
  • Creation of new patients/parents’ support associations in countries where there no associations yet, and strengthening of existing ones

Specific Objectives

The Network has the following specific objectives:
  • To strengthen the voice of patients with haemoglobin disorders in the Middle East and North Africa
  • To encourage active participation of patients in the promotion of existing policies and the  development of new strategies towards truly patient-centred healthcare for thalassaemia and other haemoglobin disorders across the region
  • To form a region-wide network with other haemoglobin disorders patients’ associations, and other disease-specific associations where appropriate, in order to create a platform for the exchange of expertise, experiences and dialogues
  • To provide information on the status of thalassaemia, its treatment and epidemiology in the region to TIF, helping TIF to plan activities and focus efforts where they are most needed
  • To make patients informed through TIF’s publications and educational events
  • To benefit from information about opportunities to participate in WHO activities
  • Actively participate and benefit from TIF’s projects and sponsorship programmes
  • Create expert patients panel with the aim to extend this experience and knowledge to other patients in countries across the region.

Organisation of the Network and member’s responsibilities

  • The Network will be coordinated by TIF and based in its head office in Cyprus. It will be a network of collaboration with no legal status. Patients/parents’ associations may nominate one representative and one alternative to the Network, who will undertake communications and dissemination of information to their respective communities. Health professionals will be individually represented.
  • It is envisaged that at least one annual meeting will be organised in one of the participating countries. TIF will aim to offer financial assistance to cover the attendance expenses of one patient/parent representative per country, subject to available budget.
  • Members of the Network need to commit themselves to attending the annual meeting whenever possible, to respond to email correspondence and member consultations, and to contribute to information-gathering tasks and other common activities to the best of their ability.

Become a member of the Middle East Network

Download the application form for Health Professionals here

Download the application form for Patients/Parents & Patient Associations here

Asia

The Asian Network aims to address the lack of awareness, as well as the lack of unity between the relatively few patients/parents, doctors and other health professionals located and heterogeneously spread in different Asian countries. The expected outcomes of the formation of the Network in the medium term are:
  • Improved awareness among medical professionals about haemoglobin disorders, their treatment and prevention;
  • More accurate picture of the health services available to patients, as well as any problems concerning take-up or access;
  • Improved epidemiological information, through collecting data from Asian countries including numbers and location of patients;
  • The above two will provide an evidence base to focus TIF’s activities on the special needs of the region and to support Regional SEARO AND WPRO)  WHO efforts towards the creation of regulations and guidelines for Hb disorders;
  • Greater awareness among patients of the existence of an international support network and peer groups in other countries;
  • Creation of new patients/parents’ support associations in Asian countries, and strengthening of existing ones, and;
  • Creation of networks of collaboration and close contacts between patients and medical professionals within and between countries.

Specific Objectives

The Network has the following specific objectives:
  • To form a Steering Committee to prepare detailed plan on how the network will operate, within a country and the region;
  • To share information and experiences both from the perspective of patients/parents and health professionals;
  • To feed back information and experiences to TIF, helping TIF to plan activities and focus efforts where they are most needed;
  • To disseminate TIF’s educational publications about haemoglobin disorders, their epidemiology, appropriate clinical management and prevention strategies to health professionals, patients/parents and the general public;
  • To gather evidence and data about the status of treatment, prevention, epidemiology, prevalence, incidence and location of highest clusters, and prepare reports to SEARO and/or WPRO-WHO and national health authorities;
  • To help prepare the ground for extensive promotion and patient/doctor participation in the 1st Pan-Asian Conference in November 2011, and;
  • To plan and implement future joint awareness and educational activities

Organisation of the Network and member’s responsibilities

  • The Network will be coordinated by TIF and based in its head office in Cyprus. It will be a network of collaboration with no legal status. Patients/parents’ associations may nominate one representative and one alternate to the Network, who will undertake communications and dissemination of information to their respective communities. Health professionals will be individually represented.
  • It is envisaged that at least one annual meeting will be organised in one of the participating countries. TIF will aim to offer financial assistance to cover the attendance expenses of one patient/parent representative per country, subject to available budget.
  • Members of the Network need to commit themselves to attending the annual meeting whenever possible, to respond to email correspondence and member consultations, and to contribute to information-gathering tasks and other common activities to the best of their ability.

Become a member of the Asian Network

Download the application form for Health Professionals here

Download the application form for Patients/Parents & Patient Associations here