June 2019
Indian CME meeting and patient congress
On March 14, 2019, IPOPI President Mrs Martine Pergent had the pleasure of attending the yearly CME meeting and patient awareness congress, by kind invitation from professor Surjit Singh, member of our medical advisor panel. The congress was organised in connection with immunology day and hosted around 200 patients and families who had travelled from all over the country to participate.
The congress featured a captivating programme with presentations regarding PIDs in the context of a resource constrained environment, presented by Professor Deepti Suri, and immunological testing in from the perspective of a developing country, presented by Professor Amit Rawat. Mrs Martine Pergent also had the opportunity to present IPOPI’s global activities centred around our 4 strategic objectives.
The programme also included an interesting presentation by Ms Rukhsana Haneff, secretary of the Primary Immune Deficiencies Patient Welfare Society (PIDPWS) in India. Ms Haneff presented the work and objectives of her organisation: to create awareness among Medical Fraternity and General Public using all available media, to persuade the state government as well as the central government for free treatment for PID patients, to persuade the Government of India to establish a well-equipped Diagnosis Centre at Bengaluru, Karnataka and to ensure timely medication to PID Patients.
Also mentioned during the congress was the importance of raising awareness amongst both physicians and pediatricians, as contrary to common perception, PIDs are not uncommon. Given a prevalence rate of 1:1200, the estimated number of patients is likely to be more than one million on the sub-continent.
Lastly the congress offered a forum for parents and patients which turned into a very interesting session where important questions were raised. The physicians themselves were astonished to see how much the patients spoke up about questions on anything from marriage and job positions to transplants – showing that the issues important for PID patients are many and varied.
