Rare disease support in China
For people and families facing conditions few doctors have seen. Talk with people in China who know what it is like, find help near you, and join the worldwide circle too. Free, always.
Next gathering in the China circle: Weekly check-in ·
If you need someone right now
From people who came through it
“To whoever needs this: A year and a half ago I was exactly where you are. For me it was a diagnosis code that does not fit the forms. I got a new job in April. It comes back so slowly you don't notice until one day you do. From someone who gets it.”
Fuz M · been through rare disease“When you first hear the word rare, it feels like a door slamming. You'll spend months explaining it to doctors and yourself. Some days you'll faint in the queue at the shop and feel like a spectacle. But you'll also find people who listen. You'll learn to pace yourself. You'll get a caseworker who helps with the bills. It won't be fixed, but it will be managed. And you'll still play guitar badly, and that's something.”
Gareth H · been through rare disease“Reading this late at night? I've been there. I was right where you are two years ago. For me it was a diagnosis code that does not fit the forms. I can talk about it now without falling apart. It comes back slowly, like feeling in your fingers after the cold. Sending love.”
lovely_quiet · been through rare disease“to whoever needs this: i was where you are in february. nobody at school had heard of it. today i cooked a proper dinner and enjoyed it. things come back, slower than you'd like but they do.”
hugosong · been through rare disease