By Vidya C.A. My 9 year old son is a rare disease patient. He has Hunter syndrome. Because of this disease both physical functioning of his body and cognitive skills...
Entering the COERD Centre of ORDI at IGICH, I was welcomed by the young chirpy voices of Ritika and Jhanvi (name changed for patient privacy reasons). Listening to their conversation...
Lalith is a father of two children with Sanfilippo syndrome. In this blog he shares his families story and his hopes for the future of research. Sanfilippo syndrome (MPS III)...
Eight years ago, when I was 16, I was diagnosed with a rare neurological disorder. The condition is known as spinocerebellar ataxia (SCA), which is one among a group of...
My name is Namitha from Bangalore. I want to share my story to empower and enable others to come out as well. I am now a PhD student working on...
