The Thalassaemia Federation of Pakistan held the 16th National Thalassaemia Conference & Workshops at Fatima Jinnah Medical University, Lahore (FJMU) on November 08, 2021. A large number of Thalassaemics, parents, doctors and social workers from all over the country attended the two days national conference.
B- Thalassaemia is the most common genetic disorder in Pakistan. The gene prevalence of Thalassaemia is around 6%, which means that 6 out of every 100 Pakistanis carry this mutant gene. With a population of about 200 million, around 12 million people are healthy carriers of this gene. Thalassaemia is an autosomal recessive disease, which means that if two carriers get married to each other then they will have a 1 in 4 (25%) chance of having an offspring with Thalassaemia Major in every pregnancy. Currently, the majority of the patients in Pakistan do not get adequate treatment.
Dr. Yasmin Raashid, Health Minister Punjab was the Chief Guest at the Inauguration Ceremony of the conference.
Lt. Gen (R) Moin ud Din Haider, president Thalassaemia Federation of Pakistan welcomed the conference participants. Speaking at the occasion, Dr. Yasmin Raashid, Health Minister Punjab said that over 6000 affected children are born annually with Thalassaemia Major meaning 17 affected children are born each day in Pakistan. These children require regular monthly blood transfusions and the treatment to just stay alive. Since there is no easily available cure for this disorder, the only hope lies in adopting a preventive program on the line pursued by countries like Italy, Cyprus and Iran, which has resulted in either complete control or significant reduction in the births of new Thalassaemia Major Children in these countries. Considering the gravity of the issue, the Government of Punjab took the lead and initiated Punjab Thalassaemia and other Genetic Disorders Prevention and Research Institute (PTGD), which is unique and can be compared with any other preventive program of the world. The project is providing services totally free of cost in all the 36 districts of Punjab. Furthermore the Government of Punjab is soon going to bring in a law on mandatory premarital Thalassaemia screening in the province. The Government under the leadership of Imran Khan is committed to provide the best of the medical services to the people of the country.
Dr. Hussain Jafri, Secretary General TFP Punjab, Presented the TFP Activities. He said that the Thalassaemia Federation and its member organizations are serving the nation by providing the much needed treatment services to Thalassaemics all over the country.
At the end of the Inauguration Ceremony, Prof. Dr. Amir Zaman Khan, VC FJMU, presented the vote of thanks. The conference highlighted the importance of Diagnosis of Thalassaemia, Prenatal Diagnosis of Thalassiaemia, Iron Chelation Therapy in thalassaemia: challenges and ground reality, Splenectomy in Thalassaemia Syndrome, Diagnosis of Thalassaemia and other genetic diseases by Molecular Techniques, Hemoglobinopathies: Diagnosis and Prevention, Punjab Thalassaemia and other Genetic Disorders Prevention and Research Institute (PTGD), Genetic Counseling for Thalassaemia and Our ‘DeSIRe’ For Decision-Making about Thalassaemia Carrier Testing. The conference’s scientific sessions and workshops were specifically designed to develop the capacity of doctors and other paramedical staff working in the country on the management and prevention of Thalassaemia. A Patients & Parents session was also held in which patients and parents discuss issues by them in the areas of treatment & care including psychosocial aspects.