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Thal e-Course for patients and parents

Thal e-Course for patients and parents

“…little has been done to prepare patients for long-term management of their diseases. They face many challenges in coping with discomfort and disability and carrying out treatment programmes on a regular basis. They need to modify behaviour to minimise undesirable outcomes, adjusting their social and work lives to accommodate their symptoms and functional limitations and deal with the emotional consequences. For their care to be effective, they must become adept at interpreting and reporting symptoms, judging the trends and tempo of their illness and participating with health professionals in management decisions.”

(Lorig K, et al. Medical Care 1999; 37(1): 5-14)

This training programme is one of the most important and ambitious projects that TIF has ever undertaken, aiming to empower patients to take meaningful and timely decisions about issues affecting their healthcare and quality of life.

About the Thal e-Course

General objective

General objective

The general objective of this educational initiative is to develop the knowledge of patients with thalassaemia in order to give them the skills, confidence and motivation to take meaningful decisions and play a key role as partners in healthcare decision-making that concerns their own health, but also in a wider context of national health-policy decision-making.

Specific objectives

Specific objectives

The specific learning objectives for patients who will complete the training include:

  1. The acquisition of in-depth knowledge about their condition, prognosis, complications, treatment options, research and clinical trials, other care services, psychosocial support.
  2. The development of the necessary skills to effectively self-manage their condition.
  3. The acquisition of the necessary knowledge to evaluate care options and new treatments.
  4. The development of an understanding of important policy issues, such as patient safety and patients’ rights.
  5. The development of the necessary skills and confidence to develop effective partnerships with doctors and other health professionals.
  6. The development of the necessary skills to cope and manage daily life better: problem-solving, goal-setting, decision-making, using resources effectively, managing pain, fatigue, anger, depression, etc. 

Desired Outcomes & Evaluation Strategy

Desired Outcomes & Evaluation Strategy

Assessment will take place through questionnaires and follow-up interviews with patients who have completed the educational courses, to assess the extent to which they perceive the education they received has had an impact on their knowledge, self-esteem, confidence and other aspects of their life, which are mentioned in the objectives above. These aspects will be assessed through follow-up studies 3 and 5 years after the initiation of the programme.

A vision for a successful Expert Patients Programme

A vision for a successful Expert Patients Programme

Increase the number of patients with chronic diseases who become informed about their condition and medication, feel empowered in their relationship with health care professionals, and have higher self-esteem;

More people contribute their skills and insights for the further improvement of services;

Increase the number of patients whose health improves or who remain stable in their clinical condition; Increase the number of patients who can effectively manage specific aspects of their condition;

Patients who become experts are likely to be less severely incapacitated and develop skills to cope with the emotional consequences of their disease as well; Increase the number of people who gain and retain employment;

Increase the number of patients who successfully use health services and health-promoting strategies

The Thal e-Course in slides Visit the platform Read Thal e-Course publication


There is a fundamental shift taking place in recent years in the way in which diseases, particularly chronic diseases, are perceived and managed. It is increasingly recognised that the patient should play a key role in the management of such conditions. This is only achievable if patients are actively involved as equal partners. Only fully-informed patients, who know their condition, its holistic care and their rights as patients and citizens, can actively participate in and contribute to decisions concerning their own health. Moreover, the inclusion of the patients’ perspective has paid an integral part in improving healthcare services. Expert patients are capable of contributing to such efforts in a wider context of public health and quality of life/human rights issues, whether these are addressed at national, regional or international level.

The establishment of an Expert Patients’ Programme constitutes a major component of TIF’s project “Reach the Patient” initiated in 2007, which aims to extend quality disease and treatment-related information to patients with thalassaemia, across the world. The objective is to enable patients  to take valuable, meaningful and timely decisions concerning their health and quality of life.

The Expert Patients Programme aims to empower patients with thalassaemia across the world to acquire a better understanding about their disease, thus aspiring to help them become able to participate meaningfully in decision-making concerning their medical and other care. The core component of the Programme is the development of the patients’ knowledge to a level where they are able to do this, through provision of reliable quality information and training, and TIF proposes to achieve this through the Thal e-Course.

The target audience of this educational initiative includes patients with thalassaemia and by extension their parents/families, given that they are carers and potential advocates for effective prevention and quality management in every affected country.
Are you a thalassaemia patient or parent to one? Are you older than 16?  You are eligible!  Sign up for the Thal e-Course


Class 1 (30 January 2018- 30 April 2018): 30 participants

Class 2 (15 May 2018- 29 June 2018), 80 participants

Class 3: (6 July 2018 – 17 August 2018), 80 participants

Class 4: (28 August- 2 October 2018): 93 participants

Class 5 (8 October -15 November 2018): depending on registrations


NB: In each class, we try to have a global representation of patients with β-thalassaemia (the form of thalassaemia that is the focus of the course), who ideally are members of an association to facilitate the development of national advocacy to fight for better quality of care in every affected country. Visit the platform

Check out participants’ names here

Have you signed up but you don’t know which class you are in? Check here