Highlights
- Rare Disease Advocate since 2007
- Co founder and Director – ORDI -Organization for Rare Diseases India
- Ashoka Fellow
- Member (Lay Person) of Central Ethics Committed on Human Research (CECHR) at ICMR ( Indian Council of Medical Research)- New Delhi since May 2020.
- Co founder, Former Founding President – LSDSS (Lysosomal Storage Disorders Support Society)
- Advisor -Global Clinical Trial Diversity Advisory Forum April 2024 – April 2025 at Boehringer Ingelheim.
- Member Global Patient Advisory Council for Rare Diseases and Patient Advisory Council Member India of Parexel.
- Member Adult Rare Disease Multi-Stakeholder Collaborate Initiative – Pfizer
- Rare Champion of Hope Awardee 2019 from Global Gene
- Member of the Panel of Expert -WHO Collaborative Global Network for Rare Diseases program (CGN4RD)
- Advisory Council Member – Karnataka Hemophilia Society, Davangere
- Technical Advisory Group Member for Rare Diseases programs of People to
People Health Foundation (PPHF), New Delhi - Co founder – Pitruaastha Foundation
- President – Pompe Foundation
- Advisor – Inclusive In India
Initiated new and innovative ideas
- First Rare disease Helpline in India – +91 8892 555 000
- RDCCC (Rare Disease Care Co-Ordination Center)
- First COERD (Center of Excellence for Rare Diseases) in India at Bengaluru
- First Exclusive Day care center for Rare Diseases in India at Bengaluru
- Race for 7- Mass Awareness Run on Rare Daises day from last 6 years
- Campaign for National Rare Disease Policy
- First NMD -Neuromuscular Clinic in India.
- Rare Star Awards
- India’s First Assisted Living facility for Rare Disease patients in Bengaluru to name a few.
About Prasanna Kumar 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 a national level advocacy for Rare Disorders for the past 11 years.
Prasanna has also Co founded and presided over a first national level parents support group for children with ultra-rare diseases (Lysosomal Storage Disorder Support Society India), with the goal of raising awareness and shared resources. Under his leadership, this society started observing International Rare Disease day for the first time in India on a national scale in 2010. He also started the Pompe Foundation in India, a specialized group focused solely on uniting and empowering patients and their families with Pompe.
He has worked extensively to create awareness on LSD and Rare diseases in India since 2008. He has represented India in various conferences and meetings internationally. He has developed a strong network of international Rare diseases and their parents groups.
Through ORDI, he has established the first nation wide Rare disease Helpline # +91 8892 555 000 in India to provide information and advise to patients with rare diseases needing medical or non-medical assistance. He has also spearheaded the first RDCCC( Rare Disease Care Co-Ordination Centre) in Bangalore, India with an aim to build critical infrastructure to connect patients with rare diseases and healthcare providers, disease area medical experts, recognized diagnostic centers, genetic counselors, caregivers, treatment options, national and international clinical trials and funding options where feasible.
He was a lead person for the advocating National Rare Disease policy. He is still working hard in campaigning for an optimum Rare Disease policy which will improve the lives of many.
He has conceived a first of it’s kind Mass Awareness Walk/Run in India, Known as RACEFOR7 for the awareness of Rare Disorders , a national level 7 km Marathon along with other directors.
His significant contributions have won him several laurels including the 2018 Ashoka Fellow award and the Rare Champion of Hope 2019
Prasanna Kumar is academically a Post Graduate in Business Management and has over 16 years of sales experience in Consumer Durable, telecom, life science and insurance industry. He has worked with companies like Sony, Reliance, Bharti, Strand Life Sciences etc. He has experience in launching product and services. Personally, he is married to Sharada and has a 21 year daughter. Nidhi is India’s first Pompe Patient
