Pristine Organics celebrates World Rare Disease Day
Pristine Organics Pvt Ltd, the Bangalore-based food technology & Nutraceutical Company, pioneering in Food Research & Development, commemorate the World Rare Disease Day by holding a one of its kind awareness program for “Inborn Errors of Metabolism in India”. This program aims at spreading awareness of the management of Inborn Errors of Metabolism (IEM) through nutritional supplementation and a natural diet.
India’s Food Safety & Standards Authority of India (FSSAI) has entered into a partnership with professional organizations, healthcare professionals and corporate to address the challenge that plagues our society. Pristine Organics cater to only 500+ IEM patients for a decade. India’s Food Safety & Standards Authority of India (FSSAI) has selected five companies to provide specialized diet, of which Pristine is the ONLY Indian company, to address this IEM issue.
The World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and management for individuals with rare diseases and their families. One such rare genetic disease is Inborn Errors of Metabolism. Inborn Errors of Metabolism is a rare genetic (inherited or congenital) disorder, in which the human body cannot properly turn the food into energy for the body consumption. This type of a disorder is usually caused by defects in specific proteins or enzymes that helps breakdown or metabolize the parts of food. Children are affected by this are unable to survive beyond the age of 1 due to complications caused by protein build-up in the body.
In India, the diagnosis is extremely limited because of lack of awareness amongst the people. IEM cases in India often go undiagnosed or misdiagnosed. Children with IEM Disorders tend to reflect different symptoms and signs based on the type of enzymes that is lacking in their metabolism. Several of the symptoms and signs that could be seen in children include lethargy, fatigue, weight loss, delayed development, skin rashes, liver enlargement, low blood pressure etc. Typically, 1 in 2497 new-borns suffers from this condition, and often don’t survive due to misdiagnosis.
According to World Health Organization (WHO), nearly 5 million children die in the first month of life in developing countries and 4 million children are born with some congenital anomaly. Almost 27-30 % of these babies suffer from IEM disease.
A special IEM Diet is required for these children to be able to process the food, and get the required nutrition for growth at the same time. The treatment process in the initial years of IEM discovery was the restriction of dietary proteins which resulted in malnourished children with further complications. IEM Diets can be formulated for specific condition. As IEM diets helps in management of the condition and increases the lifespan of the child, recent technological advancements such as enzyme replacement, gene therapy, and organ transplantation have opened doors for treatment of IEM.
Speaking on this occasion, Mr. KC Raghu, Founder & MD at Pristine Organics, said “It is indeed fulfilling to see how need based innovative nutrition products of Pristine is helping the most vulnerable and neglected segment in healthcare. In fact, it is quite heartening that we are truly pioneering and only Indian company to make products for this segment”
The program showcased, the great interaction of the parent group, doctors and nutritionist of Pristine on the grave need for nutrition solutions for IEM segment. Dr Meenakshi Bhat, Consultant Clinical Genetics & Professor, Centre for Human Genetics shared her inputs on Glycogen Storage Disorders (GSD) and Phenylketonuria (PKU). She shed more light on the need behind special nutrition care for these conditions. She also mentioned how Pristine Organics and Centre of Human Genetics walked together in the journey of providing specialized Nutrition solutions for IEM children.
The company also sells a variety of certified organic foods products right from baby food, cereals, biscuits, porridge, cold pressed edible oils, flour, nutritional supplements and health mix. The brand also creates personalized monthly supply of Health Basket which is tailored diets as per the specific health condition which consists of exotic combination of diverse organic foods range.