Rare disease support in Ghana
For people and families facing conditions few doctors have seen. Talk with people in Ghana who know what it is like, find help near you, and join the worldwide circle too. Free, always.
Next gathering in the Ghana circle: Weekly check-in ·
If you need someone right now
From people who came through it
“Not that long ago, about a year, that was me. Back then it was flying to a specialist. Some weeks I don't think about it at all. Bit by bit it comes back.”
lemon_fox54 · 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“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