Fighting for Treatment of a Rare Disease with Ramya Ramaswamy of the Raising Rare Podcast


In today’s episode, I’m talking with Ramya Ramaswamy whose son, Raghav, was diagnosed with a rare genetic disorder on his first birthday. Since the diagnosis, Ramya and her husband have shared their story, put together a team of leading scientists, raised funds, organized a research conference and are literally fighting their way to a treatment.

We discuss the challenges they’ve faced in their journey, including how COVID-19 has literally halted progress on any research being done for this rare genetic disease. We also talk about the importance of getting Raghav’s story out there and how co-hosting a podcast has been a key player in this effort.

Ramya also shares with us the fundraising efforts being done to support research in finding not only a cure for Raghav, but also a framework for finding treatment for all rare genetic diseases.

Key Topics:
  • Ramya tells the story of her son’s diagnosis (1:48)
  • What Ramya and her husband have done since Raghav’s diagnosis (3:42)
  • What is was like when Ramya found out there were other children with the same diagnosis (6:40)
  • Why Ramya decided to start a podcast about her son’s diagnosis (8:27)
  • How COVID-19 has affected the research efforts to finding a treatment (9:42)
  • The challenge in getting people to take notice in rare diseases who aren’t already directly involved (10:37)
  • How Ramya’s husband built their network of scientists, clinicians, pharmacists, and FDA consultants to advise them on finding a treatment (12:07)
  • Who Salem Oaks is and how they’ve helped Ramya’s family (13:40)
  • How Ramya has faced the challenge of opening up in her podcast (16:00)
  • Ramya talks about the fundraising they are doing and how you can help (17:30)
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