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Homepage Rare Disease Day 2022 at IndoUSrare
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  • « IndoUSrare Annual Conference – Industry Day
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Rare Disease Day 2022 at IndoUSrare

January 30, 2022
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Rare Disease Day 2022 at IndoUSrare

Rare Disease Day 2022 at IndoUSrare

Celebrating 30 Years of Rare Disease Treatment

Monday, 28 February, 2022

7:30 pm to 9:30 pm IST, 9 am to 11 am ET

We invite you to join us for this year’s #rddatindousrare, on the theme Celebrating 30 Years of Rare Disease Treatment, in honor of the millions of rare disease patients around the world, 95% who are still without any approved therapy for their condition.

Featuring a stellar set of talks and panel discussion, the event commemorates the immense progress the rare disease community has achieved since the first commercial therapy for a rare disease came out in 1992.

 

Event Highlights 

  • Keynote Address by Legend in the field of Rare Diseases – Frank Sasinowski, MPH, JD – Rare Diseases: ROARING to be heard for 30 years
  • Special Talks from Key Opinion Leaders outlining the progress in India for rare disease treatment from perspectives of key stakeholders:
  • Panel Discussion featuring representatives of India’s Rare Disease Centres for Excellence outlining the progress in India for rare disease treatment
  • Lived in Experiences from Patients living with rare disease from across the globe
  • Special Announcement – Winners of ART4RARE 2022

Why attend?

  • Listen to a Legend in the field of Rare Diseases
  • Hear from Key Opinion Leaders on the progress in India – National Rare Disease Policy and Beyond
  • Understand the Latest in Rare Disease Diagnostics and Treatment in India 
  • Listen to Patients from across the world about their experiences living with a rare disease

Rare Disease Day at IndoUSrare aims to honor and highlight the rare disease patient experience

Any questions?

Contact us at admin@indousrare.org 

 

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More about Rare Disease Day

Rare Disease Day is a day in support of the millions of people who live with rare diseases across the globe. World over, there are events with the main goal of raising awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.

Rare Disease Day is celebrated on the last day of February every year.

 

What are Rare Diseases?

Rare Diseases are just that – diseases so rare, they affect very few people in the world. Even so, there are over 7000 rare diseases. There are many different causes of rare diseases, many of these are thought to be genetic. In other cases, they occur randomly in a person who is the first in a family to be diagnosed. Because of the rarity of their illness, rare patients face unique challenges and difficulties. These range from diagnosis, lack of therapies and cures, to little social or government support.

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Copyright ©2022 Indo US Organization for Rare Diseases. All rights reserved. IndoUSrare is a registered 501(c)(3) charity organization.
MS. KANAN LATHI

Kanan Lathia is an Ambassador and scientific consultant at Indousrare.She has spent 20+ years as a research scientist focusing on neurodegenerative diseases, cancer, and HIV. She has also worked as a project manager supporting teams in building brain maps of the first 1000 days of babies. Kanan’s passion for rare diseases is driven by a personal cause. Her work with Dup15q Alliance strengthened her passion for giving back to rare disease families. Kanan hopes to scale the organization’s efforts by securing funding and building a patient alliance membership program. Kanan loves yoga and spending time between the US and India.

 Dr. Krishna Ramaswamy

Dr. Krishna Ramaswamy is a life science professional with experience in research, management consulting, and business development in academia and industry. She has a Ph.D. in Biological Sciences from University at Buffalo, SUNY, and pursued postdoctoral research in cell biology from the University of Southern California, Los Angeles. She has worked as a consultant for the biotech/pharma industry and worked with Dr. Harsha and ORDI in the past for about 2 years. Dr. Krishna currently resides in Hyderabad India and has a keen interest in the rare diseases space and would like to bring awareness about the various diseases, diagnoses and treatments that are available and those in the pipeline. She first began working in the rare disease space during her postdoctoral training and has worked on peroxisome biogenesis disorders under the guidance of Dr. Joe Hacia at USC.

Ms. Neeraja

Neeraja is in her junior year of high school, studying at a School in Gurgaon, India. She has completed all 8 grades in a set of vocal examinations conducted by Trinity College as the captain of the Student Council in her school, currently serving the post of House Captain. Neeraja aims to find solutions to the problems associated with the fields of healthcare, technology, and sustainable development. She is passionate about teenage welfare and has founded a youth-centric organization called ‘Discover Yourself’ through which she aims to inspire, and collaborate with young people across the world and wants to bring awareness regarding various teenage and adolescent issues

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