Testimonials - Prasanna Shirol, Rare Disease Advocate

Thank you for your Service to Humanity!

prasanna — Tue, 29 Apr 2025 12:38:32 +0000

Email Received

Dear Mr. Shirol,

I just saw an Instagram video that mentioned your work with rare diseases in India. I wanted to thank you from the bottom of my heart for all of your hard work; it is so much more amazing than the media perhaps realizes for you to achieve. I hope that education and awareness reaches doctors and the common people; in my experience, even what used to be the most medically advanced and aware country in the planet, America does not have what you are achieving. It took me decades of my life and one year where I managed to go to multiple specialists to diagnose many relatively mild rare conditions. Parents and teachers and doctors did not realize. It helped add unnecessary suffering and great losses for the planet. Perhaps, our destinies are all pre-written, but my personal experience definitely made me fight back tears when I read about this work you are doing. I only had a few moments to look cursorily at the broad picture, but your work seems monumental and massive. God bless you!

I had access finally circa 2018 to top specialists at Harvard affiliated hospitals and other Boston research institutes where I aggressively tried to find proper diagnoses and learned about how little the top physicians on the planet could know and how rare specialists are. The emotional and psychological toll on patients that ignorance and ego among medical professionals due to limited knowledge of the human body and disease is extreme and unnecessary. The system needs work. The nature and soul of humanity definitely needs extra doses of compassion and sensitivity. When I struggled so much in America my whole life, I can very well feel what you are doing is tremendous, as I can not find specialists for my conditions in this country at all and there are only a few in the US and globally. I am so glad that you “care for rare.”

Thank you for doing so much for your daughter, and I hope one day I can contribute to this and many other causes. What you faced was definitely more acutely and glaringly a severe health condition in the family than my more chronic but debilitating and unexplained, yet easily ameliorated (had the right resources been found earlier) conditions. This e-mail was just a note of gratitude, for I am doing very well after decades of extreme suffering and struggle to achieve health, and I am very grateful that I also got access to amazing hatha yoga and meditation and pure water and knowledge of many other rare fields that have helped me when mainstream failed. I hope you are doing well, sir. I hope my gratitude did not take up too much of your time. I thought providing some background, however vague, would make my e-mail more meaningful than one comment or sentence.

PS: There are many people that stand out on various social media posts, and yet, I am glad, that I took the time to do a web search to find your contact to thank you. Perhaps, I will do this every day – it will help restore my faith in humanity to at least focus on the good elements that make it seem there are good human beings still in this non Satyug times. Thank you also for being the first unknown human being contacted daily in what I hope becomes a link for me now. You are a double blessing! Something is very special about you. Many pranams!

Regards,

Welwisher

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Testimonials received for Race for 10th Edition 7 2025

prasanna — Tue, 25 Feb 2025 11:20:23 +0000

Thank you Mr Prasanna. It was a pleasure and honor to be part of the Race for 7 event in Hyderabad. I think you and your team are doing an amazing job in helping patients & families with rare diseases.
Best wishes & Regards,

Prajnya

Dr Prajnya Ranganath

(MD Pediatrics, DM Medical Genetics)

Professor, Department of Medical Genetics,

Nizam’s Institute of Medical Sciences (NIMS), Hyderabad, India.

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Gift from Melissa Araluppan

prasanna — Sun, 31 Dec 2023 18:16:59 +0000

This was gifted to us by Melissa Araluppan a couple of months after Nidhi went to heaven. This was the poem written by her mother. She has used a photo from Racefor7. My relation started with Melissa when she was with Quintiles during 2014. Initially we connected to create awareness on “International Clinical Trials Day” with ISCR ( Indian Society for Clinical Research). Meeting Melissa was a turning point and starting point to ORDI as a CSR team member. Getting corporate support was crucial when we started ORDI. Interest from Corporate for support was not there due to lack of awareness. Melissa facilitated meetings team and supported initially for our RDCCC ( Rare Disease Care Coordination Center) project at MSR under CSR Later for Racefor7, a unique mass awareness program in the country. This has helped to raise awareness in India.

Personally she was like my elder sister and supported and helped me for all the media /advocacy related activities.

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Archana Ravindra President IOIF

prasanna — Mon, 27 Feb 2023 13:49:05 +0000

Dear Mr. Prasanna Shirol,

On behalf of IOIF I wanted to take a moment to express my heartfelt gratitude for allowing us to sell calendars to raise funds for the treatment of patients with Osteogenesis Imperfecta (OI). Your willingness to support our cause will make a difference in the lives of those affected by this rare genetic disorder.

Thanks to your partnership, we were able to raise a small amount of funds that will go towards providing medical care, support, and resources for individuals and families living with OI. Your support also helped us to raise awareness about the condition and the need for continued research and treatment.

We are grateful for the opportunity to work with such a dedicated and compassionate organization as ORDI. Your commitment to improving the lives of those with rare diseases is truly inspiring, and we look forward to continuing our partnership in the future.

Once again, thank you for your support and for making a difference in the lives of so many individuals and families affected by rare diseases.

Sincerely,

Archana Ravindra

President IOIF

Note: Received through email dated 27.Feb 2023

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Dr Meenakshi Bhat-Consultant in Clinical Genetics

prasanna — Thu, 26 Sep 2019 23:59:16 +0000

“I am very pleased about your achievement. Richly deserved”

Dr Meenakshi Bhat

Consultant in Clinical Genetics
MBBS, MD (Paed), DCh, DNB (Paed), MRCP (Ire), CCST-Clinical Genetics (UK)

On receiving Global Gene “Rare Champion of Hope 2019” award

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Dr Aabha Nagral Gastroenterologist Special interest – Hepatology, Pediatric Hepatology and Liver Transplantation Apollo Hospital, Navi Mumbai and Jaslok Hospital, Mumbai

prasanna — Sat, 14 Sep 2019 07:38:10 +0000

“Prasanna Shirol’s name has been synonymous with cause of Rare Diseases in India. Its people like Prasanna who can bring about a tangible change in society through their untiring, focused and selfless efforts. I wish him success in all his efforts.”

Dr Aabha Nagral

Gastroenterologist

Special interest – Hepatology, Pediatric Hepatology and Liver Transplantation

Apollo Hospital, Navi Mumbai and Jaslok Hospital, Mumbai

Founding Trustee – Children’s Liver Foundation, www.childrenliverindia.org

Past President – Maharashtra Chapter of Indian Society of Gastroenterology

Past Governing Council Member – Indian Association of the Study of the Liver

Liver committee Member- ZTCC (Zonal Transplant Coordination Committee), Mumbai
Editorial board member -Journal of Clinical and Experimental Hepatology

The post Dr Aabha Nagral Gastroenterologist Special interest – Hepatology, Pediatric Hepatology and Liver Transplantation Apollo Hospital, Navi Mumbai and Jaslok Hospital, Mumbai first appeared on Prasanna Shirol, Rare Disease Advocate.

Dr Jagadish Chinnappa – Head Pediatrics-Manipal Hospital Bengaluru

prasanna — Thu, 12 Sep 2019 05:19:42 +0000

“I have been witnessing his passion for the cause children with Rare Disease since the inception of his organization.”

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We are thankful for your guidance at every step. It has been Possible only by your guidance and Blessings.

prasanna — Fri, 02 Aug 2019 06:58:20 +0000

I am glad to inform you that, my Government has agreed pay for my sons treatment Exon Skipping Therapy for DMD for a period of 6 month under medical policy for Govt employee. I am sending you the order copy.

We are thankful for your guidance at every step. It has been Possible only by your guidance and Blessings.

Mother of a son Diagnosed with DMD and Govt Employee.

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