Thursday, April 18, 2019

Rare Global Advocacy Leadership Symposium 2019

"A rare disease is rare but the global rare disease population is the third biggest population after China and India," said Nicole Boise, the Founder, and CEO of Global Genes during her speech at the Rare Global Advocacy Leadership Symposium. She also added that rare diseases impact more people than Cancer and AIDS patients combined, therefore #rareisnotrare. 

Nicole Boise, Founder and CEO Global Genes



This was for the first time that the Patient Advocates in India came together for a meeting. The event was an eye-opener and a lot of knowledge sharing happened. The resolution was taken to request the Government to make changes in their existing programmes. Each disease group spoke about their unique challenges and finally, a common agenda was set to accommodate all diseases under a common umbrella.

Patient Advocates


Founder of Interstitial Cystitis India Balaka Basu was also present in the meeting and she raised the issue that a common portal should be created for patients where they can seek help for their conditions. She also added that MBBS syllabus should include a special paper on rare diseases so that a better awareness among the medical fraternity can be created. 

Arindam Moitra from Indian Alliance of Patients Group (IAPG)

Balaka Basu, Founder of Interstitial Cystitis India



All the patient groups agreed that research is required to find cure and treatments for the diseases. Clinical trials should be waived for a few groups of patients on compassionate ground. An action plan was also chalked out under the leadership of ORDI Founder Prasanna Shirol and Co-founder Harsha. Patient's groups have taken the responsibility to take specific action in the next quarter. 

Mr. Prasanna Shirol, Founder ORDI

Group Photo







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