Ramya Ramaswamy 6/19/23 Ramya Ramaswamy 6/19/23

How high is the real cost?

Life with a rare disease changes everything for parents.

What is the cost of stress? What is the cost of scheduling everything? What is the cost of explaining your situation...again? What is the cost of one more thing?…

Ramya Ramaswamy 6/15/21 Ramya Ramaswamy 6/15/21

The Unseen and Indirect Costs of Raising a Rare Child

The costs of raising a rare child are daunting. Last time, we talked about the medical costs. In part 2 of the conversation, we are going to go a little bit deeper. We are going to discuss the impact on Sanath and Ramya’s lives, their mental health, and their relationships.

Ramya Ramaswamy 6/15/21 Ramya Ramaswamy 6/15/21

Breaking Down the Rare Disease Medical Bills

The Everylife Foundation released a report in February 2021 that showed the overall economic burden of rare disease in the US is approaching ONE TRILLION DOLLARS every year. That is an attention-grabbing number. But what does it really mean? We explore this question through Raghav’s story.