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Organizations and Societies
The Thalassaemia Society of Pakistan
The Society was established in 1994 and is an organization of volunteers from all walks of life, who have dedicated themselves to achieve the following goals:
Aims & Objectives
Create Awareness through Genetic Counseling, International Conferences, Seminars, Workshops, Brochures, Leaflets, Posters, Lectures to target audiences at college level and also involving the Print and Electronic Media to create awareness about this cause.
Thalassemia Foundation of Canada
is to support and fund thalassemia scientific research, treatment, patient services, public awareness and education.
The Thalassemia Foundation was founded in 1982 by Angela Polsinelli, the parent of a patient, with the help of a few other parents and patients. It was created because there was a large number of thalassemia patients in the Toronto area, but there was no structured association available. Dr. Freedman asked Angela if she would start an organization, and she agreed. The Cooley’s Anemia Foundation in New York City was instrumental in teaching Angela the ropes in regards to setting up an organization in Ontario.
Thalassaemia International Federation
halassaemia International Federation (TIF) has developed an internationally-recognised educational programme, with the objective to continuously educate health professionals, patients and their families, the community at large and policy-makers, based on four pillars:
The organisation of educational events including conferences, workshops and seminars at the national, regional and international level;
The preparation, translation and distribution of publications;
The preparation, organisation and contribution in courses, e.g., e-MSc Course and ENERCA, and;
The preparation and organisation of educational courses for patients and parents, e.g., the Expert Patients' Programme and Capacity Building
Thalassaemia Federation of Pakistan
Beta Thalassaemia is one of the most commonly inherited disorders in the country, with a prevalence rate of 6 % in the Pakistani population. There are more than 50,000 Thalassaemia patients registered with associations and treatment centers all over the country. Forty six associations of Pakistan have joined hands and formed a Federation by the name of Thalassaemia Federation of Pakistan.
The purpose of establishing Thalassaemia Federation of Pakistan has been to support the various associations nationwide which work for the cause of treatment and prevention of Thalassaemia. We provide a platform that unites the associations so that free exchange of information and experience takes place- which helps in forming a collective forum against
Established in 1986, Thalassemics India was conceived to check and help deal with Thalassemia. A non-governmental organization, Thalassemics India is working zealously across the country, operating in close association with doctors, drug/equipment companies throughout the country and abroad, hospitals, Thalassemia associations & thalassemia centers.
An association which was formed by a few Thalassemia parents in 1986, has now achieved the status of a State Awardee (1998) Organization with a 1200 strong memberships that includes thalassemics, thalassemia parents, associations, doctors & social workers.