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Sanofi organised Webinars to discuss rare/ genetic disorders Karachi May 6, 2021 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.
NEW DELHI: The National Policy for Rare Diseases 2021 (NPRD) was notified on March 31. The policy provides financial support of up to Rs 20 lakh, under Rashtriya Arogya Nidhi, for the treatment of rare diseases (RD) listed under group 1 (amenable to one time treatment- either hematopoietic stem cell transplant or organ transplant). Beneficiaries for such financial assistance would not be limited to BPL families, but extended to about 40% of the population, who are eligible as per Pradhan Mantri Jan Arogya Yojana, for their treatment in government tertiary hospitals only. However, the NPRD does not provide any financial support for patients of Group 3 diseases, which have a definite treatment but is life-long and expensive. It is estimated that for a child weighing 10 kg, the annual cost of treatment for some rare diseases may vary from Rs 10 lakh to more than Rs 1 crore per year with treatment being lifelong and drug dose and cost increasing with age and weight. For such patients, the government will set up a crowd-funding platform where volunteers, both corporate and individuals, can donate money for their treatment.