Get latest articles and stories on Business at LatestLY. New Delhi [India], July 1: The experts at the Rare Disease Summit emphasised the need for patient registry for accessible treatment opportunities for rare disease patients while deliberating on the various aspects of rare disease management in the country. The summit was organized by the health think tank, Integrated Health and Wellbeing Council in collaboration with AstraZeneca to create awareness on rare diseases and their effective management. Business News | Better Regulatory Mechanism and Patient Registry; a Must for Rare Disease Management; Experts at the IHW Council Rare Disease Summit.
For Kota-based vegetable vendor and kirana store owner, Mohamad Rafiq, life delivered a nasty punch not once but twice. His first born, a girl by the name of Parveen Nisha, was born with a rare genetic disease called Gaucher’s disease.
In this metabolic disease, the patient is born without an enzyme which is responsible for breakdown of fat. In its absence the fat starts accumulating in the liver and spleen, making them grow in size. The child starts to look like a pregnant woman.
Parveen could be diagnosed only by the time she turned one-and-a-half and she didn’t survive beyond her 5th birthday because her poor parents couldn’t afford the treatment that costs about Rs 1 crore per year and is life-long. Rafiq’s second born, a son, suffers from the same disease. Now, 4, Rafiq’s son benefitted from free treatment provided by a pharma company for about six months. But his future is uncertain. While the Jaipur high court has ordered a local hospital to foot the bill of his
In new rare disease policy, no cover for conditions that cost the most | Jaipur News indiatimes.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from indiatimes.com Daily Mail and Mail on Sunday newspapers.
Patients with rare diseases seek state intervention
Many patients dealing with rare diseases that need frequent medical attention were affected due to the Covid-19 pandemic.
Share Via Email
| A+A A- By Express News Service
KOCHI: Many patients dealing with rare diseases that need frequent medical attention were affected due to the Covid-19 pandemic. The community that was already struggling to get access to drugs and sustainable funding for treatment is finding it hard to hold on especially children under the age of 10. The delay in finalisation of the National Policy on Rare Diseases is one of the main reasons for this.