Rare disease support in Ecuador
For people and families facing conditions few doctors have seen. Talk with people in Ecuador who know what it is like, find help near you, and join the worldwide circle too. Free, always.
Next gathering in the Ecuador 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“Reading this late at night? I've been there. I've been there. For me it was not that long ago, about a year. A genetic test that took two years, and I couldn't see past it. I can talk about it now without falling apart. It's slow, but it does come back.”
Saeed 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. 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