I was a Panelist in Virtual session on “Stakeholder partnerships for rare disease in India- enhancing patient access conducted by OPPI ( Organization of Pharmaceutical Producers of India) Welcome by Ms Nitika Garg, Director Research and policy advocacy, OPPI Setting..
Read More
Opportunity to be speaker along with Dr K Vijay Raghavan – Principal Scientific Advisor to Govt of India and he was also one who inagurated ORDI. This discussion of “Status of Rare Diseases Today” was organized by ORF ( Observer Research..
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
Link For The Video:- https://event.on24.com/eventRegistration/console/EventConsoleApollo.jsp?simulive=y&eventid=3478701&sessionid=1&username=&partnerref=&format=fhvideo1&mobile=&flashsupportedmobiledevice=&helpcenter=&key=BB122263B173CC975B112526A3A02945&source=VC-2303987&newConsole=true&nxChe=true&newTabCon=true&consoleEarEventConsole=false&text_language_id=en&playerwidth=748&playerheight=526&eventuserid=484161919&contenttype=A&mediametricsessionid=419715217&mediametricid=4883121&usercd=484161919&mode=launch..
Read More
Aimed at raising money for treatment of rare diseases that need expensive and life-long treatment and affect a small percentage of the population News:- 1)Platform launched on August 10; 31 campaigns listed so far that need to raise more than..
Read More
The IGICH will face a serious difficulty from August 2021, the High Court observed on June 18 this year. BENGALURU: In an ongoing case in the Karnataka High Court over the treatment of patients with Lysosomal Storage Diseases (LSDs), it..
Read More
Attended RDI Members Meeting on the Global State of the Art Resource for Rare Diseases (SoA)...
Read More
#InternationalPompeDay: Pompe Foundation presents a captivating session on “Pompe: A rare disease” #InternationalPompeDay: Pompe Foundation presents a captivating session on “Pompe: A rare disease” Published 18:20 pm IST on April 17, 2021 By Our Correspondent Pompe Day panel On International..
Read More
My Quote ( Google Translated ) Speaking to the BBC, Prasanna Kumar Shirol, co-founder and executive director of Bengaluru-based Organization for Rare Diseases India (ORDI) said: “The recently announced policy has announced duty reduction. Which is a good thing. But overall,..
Read More
ORDI sees NPRD 2021 lacks focus on ailing patient affordability calls to rely on crowd funding Our Bureau, Bengaluru Wednesday, April 7, 2021, 12:30 Hrs [IST] Organization for Rare Diseases India (ORDI) strongly believes that there are many things that are..
Read More
Rare disease policy a mockery of right to health, says Bengaluru advocacy group “The NPRD, 2021, is a mockery of the right to health each person in India enjoys. The lack of foresight shines through the cold and thoughtless draft,”..
Read More