Dear Well wisher,

All  of us have many  thoughts, ideas, views,  on the same subject and we often fail to express and sometime regret later. Many times louder  voice is more heard than the softer or the correct one, Many times we may not get the opportunity to express our  views on a subject which is really a good one to the society / community, Many times people may not know the reality or the truth, many times many people may came to conclusion on wrong facts, beliefs, rumor, Some time to get feedback  so on ……..

I also felt that I must express myself on what , Why , when, who, how on many of the things, views,  issues, subject, People, place, etc  I  face in day today dealing with rare Disease community, Govt, media, Patients, Families, Personal experience in dealing with rare Disease Child etc.

Writing blog is one of my long pending things on my plate,  although many well-wisher has been pushing  me to write or express. I am not a good writer nor ever tried. I feel now is the right time. As we step into the new year 2020. This is the time to start something new. I have decided to write blogs on all that I think, plan and good things needed to the society.

I hope you like it and look forward to more interaction and honest feedback .

I wish you all a Happy New Year 2020 and let is make this  world better.

Look forward to your support as always.

Prasanna Kumar Shirol

Father of a daughter affected with Rare Disease called Pompe *Ashoka Fellow  *Rare Disease Advocate *Social Entrepreneur *Rare Champion of Hope Awardee 2019 from Global Gene *Co founder and Director – ORDI -Organization for Rare Diseases India * President – Pompe Foundation * Adviser – Inclusive In India *Co founder, Former Founding President – LSDSS (Lysosomal Storage Disorders  Support Society) *