Neurogene Announces EMA Grants Orphan Drug Designation to CLN5 Batten Disease Gene Therapy biospace.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from biospace.com Daily Mail and Mail on Sunday newspapers.
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 San
Esya Labs Provides Novel Research Assays to Accelerate Drug Discovery Efforts
04/06/2021 | 10:51am EDT
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Esya Labs, which is developing several ground-breaking novel research assays, today has announced that Novartis is among the first companies to use its technology.
Esya Labs was co-founded by Dhivya Venkat, CEO, (image left), and Dr. Yamuna Krishnan, Chief Scientific Officer, (image right). (Photo: Business Wire)
Novartis, a global healthcare company, has used a patented assay developed by Esya Labs to accelerate drug discovery efforts for Mucolipidosis Type IV, a rare inherited metabolic disorder characterized by delayed development and vision impairment.
Fund support from government is vital for continual treatment of those with rare diseases
It is binding on a welfare state to take care of every single citizen. Securing the wellbeing of every one, particularly those unable to help themselves, irrespective of whether they constitute a critical mass or not, is important. The recent notification of the National Policy for Rare Diseases 2021 after various interventions, including the court, is pegged on this principle of inclusion. A good start, it offers financial support for one-time treatment of up to ₹20 lakh, introduces a crowdfunding mechanism, creates a registry of rare diseases, and provides for early detection. In its final form, however, the policy has left the rare diseases lobby sorely disappointed on a crucial note. Rare diseases are broadly defined as diseases that infrequently occur in a population, and three markers are used the total number of people with the disease, its prevalence, and the availability/non-avail
Know what diseases fall under Rare Diseases category indiatvnews.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from indiatvnews.com Daily Mail and Mail on Sunday newspapers.