Webinar: Rare Lives - The People Beyond Rare Illnesses

There are more than 8,000 documented rare diseases in the world. An estimated 70-90 million Indians are said to be rare individuals. Most rare diseases are incurable, and where there are cures, the costs are prohibitive for patients and families. Rare diseases can also lead to disabilities. Yet why is that there is little public awareness of rare diseases?

This #RareDiseaseDay2021, join us to meet and hear the stories of people who have been part of the 1 in 20,000 podcast series. Launched in 2019, the series offers a window into the lives of rare individuals, their search for proper medical diagnosis, treatment, and well-being. Rare Lives is the second season of the 1 in 20,000 podcast series.

This series has sought to go beyond the stereotypes associated with rare individuals, who often end up being statistics in public conversation. For instance, it is said that the prevalence of a rare illness – FSHD – is 1 in 20,000 children. The series, however, dives into the perspectives, joys, challenges and motivations of rare individuals and their support systems. The upcoming session is a rare chance to see the human face behind the podcast episodes. They represent countless patients, families, caregivers, doctors, activists, and geneticists working to improve the life of every person who is living with a rare disease in India.

Event Timing: Feb 28, 2021 at 12:30 – 2:00 PM IST

Speakers:

Dr. Priyanshu Mathur

Pediatrician at the JK Lone hospital, Jaipur.
Dr. Priyanshu featured in the episode Why it is not easy to diagnose a rare disease in our podcast series 1 in 20,000.

Iftikhar Zia

Mr. Zia has been volunteering on rare diseases and inclusivity since 2015. He’s the founder of PossiAbilities- a platform for Positive Stories of rare individuals who face challenges and yet keep performing. He is father to a rare individual.

Mr. Zia featured in the episode A Father’s Journey in our podcast series 1 in 20,000.

Shambhavi Ravishankar

Ms. Ravishankar is a person living with Alagille Syndrome. Diagnosed as a child, her commitment to fighting for the rights of persons living with rare diseases led her to study law. She is a Felix Scholar and lawyer, qualified with a Masters in Human Rights Law from the University of Reading. She works in public policy and legal research and volunteers her time with rare disease organisations in India and the US.

Read this blog experience written by her as part of the 1 in 20,000 podcast series.

Vipul Goyal

Mr. Goyal is currently a co-founder of the Indian Association of Muscular Dystrophy. He is a person living with Limb-Girdle Muscular Dystrophy.

He featured in episode Living Rare in our podcast series 1 in 20,000.

Host:

Avantika Shrivastava

Avantika Shrivastava is a Senior Communications Officer at Accountability Initiative (AI). She has worked as a strategic communication professional with Oxfam and Doctors Without Borders in Delhi. Before making a transition to the development sector, she was a journalist at news agency Press Trust of India.

Ms. Shrivastava is a person living with FSHD. She is also the host of Season 1 and Season 2 of our podcast series 1 in 20,000.