The psychological impact of rare disease is as real as the physical. Here's why we need to talk about it more openly — especially in South Asian communities.
August 29, 2024Blog
Articles, reflections, and resources from our community — on rare disease, advocacy, culture, and wellbeing.
Post 1 through 6 of 6 total posts
Isolation is one of the hardest parts of rare disease. The internet has changed what's possible — here's how to find your people.
July 18, 2024
Caring for someone with a rare disease is its own full-time role. For South Asian women, cultural expectations can make it even harder to ask for support.
June 5, 2024
Self-advocacy is a skill. And for women, particularly women of colour, it's often a necessity. Here are strategies that have worked for our community.
May 14, 2024
Being South Asian shapes everything about how we experience illness — from family dynamics to doctor interactions. Let's talk about it honestly.
April 22, 2024
A rare disease diagnosis can feel overwhelming. Here's a grounded starting point for patients and families who are just beginning their journey.
March 10, 2024