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.

 

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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

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View The Agenda

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

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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.