Hi, my name is Parthvi Mewada and I’m a survivor of Steven Jonson syndrome. SJS is a very painful and a rare disorder of skin, it affects both skin as well...
My son, 20 years old recently have been diagnosed with two rare diseases NUTCRACKER SYNDROME and MALS SYNDROME (median arcuate ligament syndrome/ celiac artery compression syndrome/ Dunbar syndrome etc.) He...
Surbhi Manocha Choudhary, A #RareDisease Warrior living with #HUVS has broken all #odds to make it to the finals of #MrsFemina. On behalf of Rare Disease community, @ORDIndia.in wishes her...
MVS Sampreet, who has been affected by Duchenne muscular dystrophy (DMD) since birth, is pursuing his MBA from IIM Bangalore. He completed his under graduation from Shri Ram College of...
Rare Disease Warrior; Dr. Sarthak Kamath , during his graduation ceremony was honored today with awards from Dr. Sudhakar, Minister of Health and Family Welfare, while Principal of KIMS, Dr....
LIVING WITH A RARE DISEASE Hello everyone, I am Sarthak Gawri and I am suffering from a rare disease called Duchenne Muscular Dystrophy. It affects muscle strength of the whole...
Duchenne Muscular Dystrophy Sarthak Gowri and His Wonderful Family A Memorable trip to...
I know to Eat!!! Hurray!!! By Harish Ravishankar Another milestone to share!!! Over the last few days, we are seeing Manasvini (5+ years now) trying to pick crispy food items...
My Hurdles Hi, I am Deeksha Sampath, nine years old from Bangalore, suffering from a rare disease called SMA; it is killing all my physical abilities day by day. At...
Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.
