Community🇮🇩
Balikpapan Peer Support Group
Run by people who have been through adjusting to a disability and living with hiv themselves.
Weekdays and Saturday mornings
Rare disease support in Indonesia
For people and families facing conditions few doctors have seen. Talk with people in Indonesia who know what it is like, find help near you, and join the worldwide circle too. Free, always.
Next gathering in the Indonesia circle: Weekly check-in ·
If you need someone right now
Help for rare disease in Indonesia
Professional🇮🇩
Bayu Counselling
A small team supporting ms, parkinson's, als and neurological conditions and organ transplant. Free first conversation, then low-cost sessions.
Tue to Sat, 10 to 6
Professional🇮🇩
Northside Debt Advice, Bogor
A small team supporting chronic pain and organ transplant. Free first conversation, then low-cost sessions.
Tue to Sat, 10 to 6
From people who came through it
“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“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. 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“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