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European Network established as pilot project

TIF’s recent delegation visits in Europe (Germany, Belgium and the Netherlands, March 2009) served to kick-start an important initiative: the European Network of Patients’ Organisations and Medical Specialists in Haemoglobin Disorders. This is a pilot network, and the intention is to form similar network in other regions, such as Asian and the Middle East.

The objectives of TIF’s regional networks are:

• To provide more accurate data on the numbers and locations of patients with haemoglobin disorders in various countries, available treatment and existing problems in access, health systems, etc.
• To improve awareness among medical professionals, patients and parents about optimal treatment and prevention.
• To promote solidarity among patients within and between countries through TIF’s international support network. 
• To promote networking and exchange of information and experiences between medical and other health professionals in the field from different countries.
• To feed back information, patients’ experiences, needs and wishes to TIF, helping us to take positions on various policies and focus our efforts where they are most needed.

We hope to achieve:

• A solid evidence base that can focus activities and support our advocacy work with EU and WHO.
• A channel through which patients/parents’ associations can be directly involved in the policies TIF is promoting both in Europe and worldwide – including patients’ rights, cross-border healthcare, patient safety, information to patients, health literacy, reference networks of expert centres, clinical trials and drugs regulations.
• A more powerful patients’ voice and more visibility for haemoglobin disorders – at national, European and international levels.

The European Network will be coordinated by TIF from its offices in Cyprus. It will have a Steering Committee, to which patients/parents’ associations can nominate one representative and one alternate. Health professionals will be represented individually. It is envisaged that the network will meet once a year.

Already several patients’ organisations and doctors have expressed their interest to join from Germany, Belgium, and the Netherlands. We want more members and more countries! Patients/parents’ associations and medical professionals who are keen to participate in these activities for the benefit of all European patients, are welcome to join. The only criterion is a valid membership of TIF.

Please email TIF at thalassaemia@cytanet.com.cy or telephone +357 22 319 129.