Patients With Rare Diseases Hold Rally

Published: 01st October 2014 06:04 AM  |   Last Updated: 01st October 2014 06:04 AM   |  A+A-

BANGALORE: A rally was held at Freedom Park demanding setting up of a special unit for rare genetic diseases at Indira Gandhi Institute of Child Health.

The demonstration was organised by Lysosomal Storage Disorder (LSD) Support Society. About 50 patients, their parents and relatives holding placards and banners took part. They also submitted a petition to N Sivasailam, Principal Secretary, Health and Family Welfare Department.

There are about 50 known patients in the state suffering from LSDs, a group of over 45 rare genetic disorders that occur due to deficiency of specific enzymes in special compartments (lysosomes) of cells. Prasanna Shirol, founder member, Organisation for Rare Disease India (ORDI), said, “We urge the CM to release funds allocated in the budget for the treatment of rare diseases without any further delay.”

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