Rare Disease Day at IndoUSrare
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A Conversation on the Rare Disease Patient Experience in the USA and the Indian subcontinent
About this Event
We are pleased to present to you RARE DISEASE DAY at IndoUSrare, a conversation on the Rare Disease Patient Experience in the USA and the Indian subcontinent.
On Rare Disease Day 2021, we want to highlight the parallels and contrasts between the rare disease patient experience in India and the US. At our Rare Disease Day event, we have two esteemed guest speakers, Dr. Sai Kaustuv Dasgupta (India) and Ms. Christine Von Raesfeld (USA) providing their perspectives and life stories.
We hope this discussion help guide the conversation about life as a rare disease patient/advocate in India and the US.
Let’s Roar for Rare!!
Program Agenda:
- Welcome and Introduction
- Talk by Ms Christine Von Raesfeld
- Talk by Dr. Sai Kaustuv Dasgupta
- Q &A session to be kicked off by moderators
- ART4RARE winners announcement by Guest speakers
- Thank you Note by Event Organizers
About the Speakers:
Christine Von Raesfeld: As Founder/CEO of People with Empathy, Christine Von Raesfeld is a leader in bringing a critically needed patient perspective to cutting-edge medical innovations. Committed to providing patients with chronic and rare diseases with the support they need, Christine works with patient advocacy organizations, industry representatives, and individual patients and their loved ones. Living with many rare and chronic diseases, she believes that in order to foster understanding and empowerment, patients must be treated as people first. As a patient involved in Stanford’s Humanwide program, she speaks on the benefits and advantages of precision medicine, with a special interest in pharmacogenomics.
Christine’s drive to make lives better for patients has been nationally recognized. In 2019, she spoke on stage at the Startup Health Festival as an invited guest of Sanguine Biosciences. In 2018, Christine served on the Team of Patient Advisors for PatientsLikeMe. She was also recognized as a Wego Health 2018 Top 10 Healthcare Collaborators Patient Leader as well as named one of Silicon Valley Business 100 women of influence in 2019 and recognized with a Community Hero Award in 2020.
Dr. Sai Kaustuv Dasgupta: Wheelchair Warrior of India, Motivational TEDx Speaker, Goodwill Ambassador & Certified Happiness Coach
Having a rare Brittle Bone Disease called Osteogenesis Imperfecta and going through more than 50 fractures, Dr. Sai Kaustuv Dasgupta, a 90% differently-abled youth from Andhra Pradesh has not broken his willpower to soar high. He is popularly known as the Wheelchair Warrior of India. He has a severe hearing impairment and is confined to an electric wheelchair. By profession, he is an International Graphic Designer, Motivational, TEDx Speaker, and India’s first differently-abled Certified Happiness Coach. By passion, he is a singer, entrepreneur, author, Limca, India, World Record holder, Inclusion & Diversity Champion, Global & Goodwill Ambassador for family peace & founder of a virtual platform called Happiness Unlimited.
Through his Happiness Coaching, Dr. Sai has inspired millions of people, especially, global leaders, scholars, doctors, students, corporate people & young IT professionals with Live & Online webinars in various institutes like Microsoft, Accenture, Marriott Hotels, Medicover, Rotary International, Jain University, etc. in different states of India, as well as those in countries like the US, Australia, Malaysia, Singapore, Thailand, Indonesia, Nepal to name a few. He researched in the field of accessibility and hopes to bring positive awareness to transform India into a wheelchair-friendly country. Being 90% differently-abled, he has been honored as 4th Global Icon with leadership traits after Helen Keller, Stephen Hawking & Srikanth Bolla acknowledged by people around the world. His Virtual Community Happiness Unlimited strives to bring back the purity of heart and genuine happiness in society and making this planet a better place to live with harmony, happiness & peace.
Event Video
A Conversation on the Rare Disease Patient Experience in the USA and the Indian subcontinent