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Rare disease support in Kenya

For people and families facing conditions few doctors have seen. Talk with people in Kenya who know what it is like, find help near you, and join the worldwide circle too. Free, always.

Next gathering in the Kenya circle: Weekly check-in ยท

If you need someone right now

Help for rare disease in Kenya

CommunityLow cost๐Ÿ‡ฐ๐Ÿ‡ช

Malindi Peer Support Group

Practical help for people dealing with living with cancer and diabetes, plus a weekly drop-in.

Evenings and weekends

ProfessionalLow cost๐Ÿ‡ฐ๐Ÿ‡ช

Rashid Counselling, Kisumu

Practical help for people dealing with stroke recovery and infertility and ivf, plus a weekly drop-in.

Weekdays and Saturday mornings

From people who came through it

  • โ€œFor 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.โ€

    waveeast1993 ยท been through rare disease
  • โ€œReading 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.โ€

    spark_dog33 ยท been through rare disease
  • โ€œHello from the other side of it. I was right where you are not that long ago, about a year. It was flying to a specialist and I couldn't see past it. Some weeks I don't think about it at all. Bit by bit it comes back. Be gentle with yourself.โ€

    tide_flame45 ยท been through rare disease
  • โ€œWhen 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.โ€

    Gareth H ยท been through rare disease

Rare disease support in other countries