The European Network is the first of TIF’s regional networks of patients’ organisations and medical professionals. It will address the current lack of unity between the relatively few patients/parents, doctors and other health professionals located and heterogeneously spread between and within European countries.

The network will gather together all medical professionals and patients’ organisations involved in haemoglobin disorders to form a platform for sharing information, exchanging experiences and contributing to TIF’s European policy work.

The objectives of the Network are to :

  • form an accurate picture of the health services available to patients in different EU member states, as well as any problems and challenges concerning take-up or access
  • disseminate reliable, up-to-date information about haemoglobin disorders, their clinical management and prevention strategies to health professionals, patients, their families and the general public
  • gather important epidemiological information (prevalence, incidence, location of clusters) and evidence about the status of treatment, prevention, through collecting data from each participating country
  • Prepare reports to EURO-WHO, national health authorities and EU bodies to support TIF’s advocacy and policy work
  • Feed back information to TIF and clarify the specific needs of patients across Europe, in order to help TIF plan and focus its activities
  • Foster collaboration and close contacts between patients and medical professionals within and between countries
  • Encourage the formation of more patients’ support groups in those countries where they do not yet exist
  • plan and implement future 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.

Join the Network!

If you are interested in joining this network please download and fill in the relevant application form:

Application form for patients’ organisations
Application form for health professionals

Please send your form to TIF either by email, fax or post at:  

Thalassaemia International Federation
PO Box 28807
2083 Nicosia
Cyprus
Tel: + 357 22 319 129
Fax: + 357 22 314 552
Email: thalassaemia@cytanet.com.cy

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