Last year we launched a podcast called 1 in 20000. Hosted and led by Avantika Shrivastava, the podcast gave a glimpse into the lives of those people living and suffering with rare diseases. Avantika’s candid discussions with people with rare diseases, family members, lawyers among others brought out never-before-heard discussions and perspectives.
This podcast is and remains India’s first podcast on rare diseases. As a platform we are committed to raising awareness on underrepresented and underreported issues and the issue of rare diseases is one such critical issue.
India so far just has a draft policy on the issue and it doesn’t do enough and offers very limited solutions to those with rare diseases. People suffering from rare diseases are often invisibilised and their stories lie in the margin. Treatments are far and few in between; if available are often very expensive and unaffordable; diagnosis remains a challenge & research and treatment isn’t prioritised. Heck we don’t even know how many people in India suffer from rare diseases! Children are worst affected and some of these diseases have a high fatality rate.
“If we do a season 2, I want to expand it, I want to see how they are living, and what kind of experiences they are bringing to the table and what the society and govt can do to make life easier for all of us to understand the person and not make rare disease a statistic. But that can’t be done if we don’t fundraise enough as it takes a fair bit of reach and reporting." – Avantika
Suno India is an independently run platform and we rely on you, our listeners to support us. In the second season, we want to go and meet more people with rare diseases. We want to find these stories of hope, stories of resilience and for which we need your support. To bring “Season 2 of 1 in 20000" come to life, we urge you all to contribute generously.