Sanofi organised Webinars to discuss rare/ genetic disorders

Karachi: Sanofi Pakistan announced that a series of Webinars were held to discuss and debate the unmet needs of patients of rare/genetic disorders. Participants included Dr. Faisal Sultan (Special Assistant to PM on Health), Dr. Yasmin Rashid (Punjab Health Minister), Prof. Dr. Huma A. Cheema (Prof. of Pediatric Gastroenterology- Hepatology, Genetic & Metabolic Diseases), Atif Ejaz Qureshi (President, Lysosomal Storage Disorders Society) and Khaled Esmat (Medical Head, Asia & Africa Zone, Sanofi Genzyme).

Giving an overview of the burden of rare/ genetic disorder in Pakistan, specifically Lysosomal Storage Disorders (LSDs). In 2013, Prof Cheema said, “According to a conservative estimate, 50% children in Pakistan die of rare genetic disorders (after malnutrition & diarrhea) - yet there is no policy to safeguard the lives of children living with rare genetic diseases”. With the assistance of Sanofi Pakistan, The Children’s Hospital (Lahore) has established a central registry to determine disease prevalence.

Commenting on the national health agenda, Dr. Sultan candidly shared that there had been no discourse on rare diseases, primarily because governments tend to give weightage to more common diseases with a larger impact. In the context of COVID-19 and other more common conditions, he said, “It is inevitable that rare conditions end up going to the back burner. However, a child with a rare disease has the right to healthcare as much as a child with a more common disease”. ****