Children’s Liver Foundation (CLF), Lysosomal Storage Disorders Support Society (LSDSS) and Jaslok Hospital invite you to attend an informal get-together to celebrate Gaucher Disease Month on 21 September 2013 at Jaslok Hospital Auditorium, 3rd floor, 9.30 am to 12.30 pm. View Program here
Gaucher disease is a rare genetic disease, but is the commonest lysosomal storage disorder in India. There is little awareness about the disease which can present in children and adults and is often mistaken for other disorders. With diagnosis and treatment now possible, the medical fraternity needs to to be sensitized about the existence of the problem and potential treatments.
This meeting will be attended by patients and their care givers who will share their problems and anxieties with a group of experts who are involved in treating this disorder. Besides, meeting other patients and care givers of patients of rare diseases, gives immense moral support and strength to affected families to face the problem. These individuals realise that they are not alone. It also helps them form support groups among themselves through social media. They can lobby for financial help for these patients from their employers, government and insurance companies.
Chief Guests Police Commissioner Mr. K.P Raghuvanshi, IPS, Thane and Jt. Commissioner of Police, Mr. B K Singh, IPS, Thane have kindly consented to inaugurate the program. They have been very supportive of their police staff’s child’s health, who has been fighting this Gaucher Disease.
We look forward to your participation and support.
Children’s Liver Foundation Team
RSVP: SMS 98923 30575
Program : http://www.childrenliverindia.org/node/528