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عربي

Thalassemia Patients Friends’ society

Who are we:
            Thalassemia Patients’ Friends Society (TPFS) is a nonprofit Palestinian non-governmental organization, working on building patients’ capacities in health, economic and social aspects, in order to improve their quality of life, TPFS seeks to promote the individual and the collective voice of thalassemia patients and advance this voice to the society in general, and the decision makers in particular, in order to protect and advocate their rights, and allow them to effectively contribute to the Palestinian society. TPFS was founded in 1996 by a group of thalassemia patients, their families and professionals interested in the disease, and it is registered in the Palestinian ministry of interior permit number 2014 in the West Bank and Gaza strip.

 

Vision:
            A quality life for all thalassemia patients in an aware Palestinian society devoid of new thalassemia births.

 

Mission:

      TPFS seeks and through the cooperation with governmental and non-governmental partners, to improve the quality of life of thalassemia patients, by improving their capacities, securing their medical, economic and social needs, and guaranteeing their rights of effective participation in the Palestinian society. TPFS aims to preserve the national achievement of avoiding new thalassemia births.

 

Goals:

  • To advocate for patients’ rights in all life aspects, and improve their capabilities in accessing quality comprehensive services especially in the health, counseling, economical, and social aspects, in order to enable them to live a fulfilled self-reliant life in a supportive environment.
  • To pressure decision makers everywhere, in order to secure comprehensive and consistent health care services for thalassemia patients.
  • Conducting continuous awareness campaigns, to improve societal awareness of thalassemia, its nature, transmission, and prevention, with special focus on the youth.
  • Capacity building of the health care cadres in the Palestinian ministry of health and non-governmental organizations on thalassemia treatment protocols and all new developments in the field.
  • To strengthen ties with governmental and non-governmental institutions, to support TPFS goals.
  • To conduct research projects about thalassemia in the Palestinian society, in order to increase the scope of understanding about the disease.
  • Decrease the number of thalassemia new births from an average of 40 births/year in 2000, to an average of 2 births /year in 2018.
  • Increase the average age of thalassemia patients from 8 years to 22 years in the past two decades.
  • Advocating for the pre-marital blood test for thalassemia, which helped decrease marriage cases between thalassemia carriers and the number of new births affected with the disease.

Board Members

Dr.Bahar Karmi
Dr.Bahar Karmi
TPFS Chairman
Physician / Clinical Pathologist-Microbiologist & Immunologist. Jordanian Board in clinical pathology / Microbiology, Immunology 1991. MsC. Clinical Pathology Medical Microbiology and Clinical Immunology.

Team Members

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