Rare disease support in Peru
For people and families facing conditions few doctors have seen. Talk with people in Peru who know what it is like, find help near you, and join the worldwide circle too. Free, always.
Next gathering in the Peru circle: Weekly check-in ·
If you need someone right now
From people who came through it
“Reading this late at night? I've been there. About three years ago, that was me. Back then, a condition only 300 people in the country have. I laugh properly again.”
spark_dog33 · 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“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“For anyone new to this: I've been there. For me it was about three years ago. I remember explaining it to every new doctor like it was yesterday. Yesterday I booked a holiday. Bit by bit it comes back. You've got this, even if it doesn't feel like it.”
waveeast1993 · been through rare disease