The children, most of whom are below 15 years, have rare congenital diseases called Gaucher disease, Fabry disease and Fanconi anaemia, among others. Over 300 children in India with rare diseases are currently unable to receive treatment because the Union..
Read More
Prasanna Shirol currently serves as the Co-founder & Executive Director of ORDI (Organization for Rare Diseases India), an Umbrella organization that represents 7000+ diseases in India. He has been instrumental in national-level advocacy for Rare Disorders for the past 11..
Read More
Link for original video : https://youtu.be/d5n5RQwYH8s..
Read More
Link for original Video : https://youtu.be/NegGxkxFZB8..
Read More
Link for original Video : https://youtu.be/rCTjJ7o4o2w..
Read More
Link for original video : https://youtu.be/vPRsxJ9X-v0..
Read More
Link for Original Video : https://youtu.be/-qgtv7o-cdg..
Read More
Link for original video : https://youtu.be/mgDxW7udB5U..
Read More
Link for original video : https://youtu.be/NbWBTqJ5B5A..
Read More
Link for original video : https://youtu.be/81MNTzLYWgg..
Read More
Link for original video : https://youtu.be/Qk6nLRMNBZM..
Read More
Link for original Video : https://youtu.be/FEZ3mLcE5m4..
Read More
Link for original Video : https://youtu.be/FG4bEpfo9fk..
Read More
Appealed to Dr Ashwathnarayan C. N., Honorable Minister for IT BT and ST – Govt of Karnataka, for implementing “Orphan Drug Policy” for the state of Karnataka and “National Policy for Rare Diseases” in the state on 5th Aug 2022..
Read More
I Participated in a meeting of the Patient Advocacy groups for Rare Diseases regarding the ‘Brainstorming for Rare Diseases in India’ which was scheduled under the Chairpersonship of Dr. Swasticharan L., Addl. DDG & Director EMR on 31st January 2022 at 03:00pm. He Represented the ORDI..
Read More
Inborn error of metabolism (IEM) is a spectrum of diseases that can affect the normal metabolism in children, said doctors. Screening of newborns or screening of parents during the pre-natal period can help detect inborn metabolic disorders in children that..
Read More