Video Gallery - Prasanna Shirol, Rare Disease Advocate

Standard of Care for SMA – Spinal Muscular Atrophy at Delhi

prasanna — Fri, 30 Aug 2024 13:35:27 +0000

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Flagging off -ISCR Marathon -3k run Run4Reasesrch on 30 June 2024

prasanna — Sun, 30 Jun 2024 10:52:43 +0000

The post Flagging off -ISCR Marathon -3k run Run4Reasesrch on 30 June 2024 first appeared on Prasanna Shirol, Rare Disease Advocate.

prasanna — Thu, 08 Feb 2024 13:27:24 +0000

I 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.

The post first appeared on Prasanna Shirol, Rare Disease Advocate.

Nidhi’s Life Video

prasanna — Mon, 27 Nov 2023 13:22:23 +0000

My daughter Nidhi, India’s First Pompe Patient, Pompe a Rare Genetic condition. She lived on Tracheostomy for 16 years, and was going to School / college with 3 machines. She inspired millions in India for the best living example with Rare disease and became a reason for Change in India. She is the reason for me to start Rare disease advocacy movement in India, Who led the advocacy movement in India. Today there Various policy changes in INDIA Including Rare Disease Policy and treatment. www.ordindia.in, www.racefor7.com Mobile : 9980133300 Email: prasannashirol@gmail.com

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Who after me? | Prasanna Shirol | TEDxPune

prasanna — Sun, 05 Nov 2023 10:47:45 +0000

The post Who after me? | Prasanna Shirol | TEDxPune first appeared on Prasanna Shirol, Rare Disease Advocate.

Free Seminar on Puberty in Angelman Kids

prasanna — Fri, 27 Oct 2023 07:14:40 +0000

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NF Awareness Day – May 17th

prasanna — Fri, 27 Oct 2023 06:46:51 +0000

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Interview with Snigdha

prasanna — Sat, 13 Aug 2022 06:52:08 +0000

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 years. He 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.

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Race For 7 – 2022 – Live Video – Bangalore – Karnataka

prasanna — Sat, 13 Aug 2022 06:47:28 +0000

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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 01

prasanna — Sat, 13 Aug 2022 05:53:47 +0000

The post ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 01 first appeared on Prasanna Shirol, Rare Disease Advocate.