The Thalassaemia Federation of Pakistan held the 13th National Thalassaemia Conference & Workshops at Fatima Jinnah Medical University, Lahore (FJMU) from December 08-09, 2018. A large number of Thalassaemics, parents, doctors and social workers from all over the country attended the two days national conference.
The Inauguration Ceremony of the Conference was held on 08th December 2018. Ch Muhamamed Sarwar, Governor Punjab and Mr. Aon Abbas Buppi MD, Pakistan Bail Ul Maal were the Chief Guest and Guest of Honour respectively at the Inauguration Ceremony of the conference. At the Inauguration ceremony, Prof. Amir Zaman Khan, VC FJMU 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 Prevention Project (PTPP), 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.
Mr. Aon Abbas Buppi, while addressing the ceremony announced that Pakistan Bail Ul Maal shall work on Thalassemia on priority basis and in this regard Pakistan Bail Ul Maal shall establish six new Thalassaemia treatment Center in the country. Moreover, the budget of Thalassaemia has also been doubled, which will go a long way in improving Thalassaemia treatment services in the country.
The Governor Punjab, Ch Muhamamed Sarwar said it is heartening to see that Thalassaemia Federation and its member organizations are serving the nation by providing the much needed treatment services to Thalassaemics all over the country. I am pleased to see that Thalassaemia experts from all over the country are presenting the latest treatment and prevention protocols at the conference. The Government under the leadership of Imran Khan is committed to provide the best of the medical services to the people of the country. I am sure that with Dr. Yasmin Rashid being the Health Minister of Punjab, the neglected area of Thalassaemia will get its due share. At the end of the Inauguration Ceremony, Lt. Gen (R) Moin ud Din Haider, president Thalassaeia Federation presented the vote of thanks. During the inauguration ceremony, Awards of Excellence were also given to five Thalassaemia patients, who had shown outstanding performance in education or extracurricular activities.
The conference highlighted the importance of Holistic approaches to thalassaemia care, Safe Blood – where we are and the way forward, Prevention of Thalassaemia, Antigen determination for Thalassaemia patients from Pakistan using lean sequencing process, Implication of having HbD in Punjab, Role of GγXmnl polymorphism for Hydroxyurea response in clinically and genetically varied beta thalassaemia patients in Punjab, Molecular genetic testing for hemoglobinopathies, Autoimmunization and Alloimmunization in transfusion dependent thalassaemia major patients, Screening of blood and blood products, Establishment of a thalassaemia registry, Level of awareness about thalassaemia among future health care providers. 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 whcih patients and parents discussion issues by them in the areas of treatment & care including psychosocial aspects.
The conference included workshops on Diagnosis of Thalassaemia Syndromes, Blood transfusions in Thalassaemia, Iron Chelation therapy – National Guidelines, Complications in thalassaemia, Prevention of thalassaemia and case discussions. The structure of the workshops allowed close contact between health care providers including doctors and paramedics with Thalassaemia patients. The interaction proved instrumental in developing awareness and understanding between the two.
The Annual General Body Meeting (AGM) of Thalassaemia Federation of Pakistan was also held on December 08, 2018 at the Main Auditorium, Fatima Jinnah Medical University, Lahore. During the AGM, elections of the executive committee members for the next two years were also held. Lt. Gen (R.) Moin Ud Din Haider, the president of Thalassaemia Federation of Pakistan presided the Annual General Body Meeting and all the 52 Thalassaemia societies working in the country attended this important meeting. Mr. Sardar Usman Ahmed Khan Buzdar, Chief Minister Punjab also hosted a Banquet Dinner for Thalassaemia patients and conference participants on December 08, 2018 at Chief Minister Office, Lahore. During this occasion, Mr. Sardar Usman Ahmed Khan Buzdar said that the Government of Punjab under is committed to the vision of Mr. Imran Khan to provide the best of health services to the people of country. At Punjab we are taking this vision forward and in this regard the health budget of the province is also being increased significantly. Dr. Yasmin Rashid, health minister Punjab is working very hard to bring about a change in the health of the people of Punjab. She has worked for a long time on Thalassaemia and I assure her all my support for advancing the cause of Thalassaemia in the province.