Service🇵🇷
Easy Ride Patient Transport, Bayamón
A small team supporting rare disease and living with hiv. Free first conversation, then low-cost sessions.
Weekdays and Saturday mornings
Rare disease support in Puerto Rico
For people and families facing conditions few doctors have seen. Talk with people in Puerto Rico who know what it is like, find help near you, and join the worldwide circle too. Free, always.
Next gathering in the Puerto Rico circle: Weekly check-in ·
If you need someone right now
Help for rare disease in Puerto Rico
Professional🇵🇷
César Counselling
Practical help for people dealing with caring for someone with dementia and living with hiv, plus a weekly drop-in.
Weekdays and Saturday mornings
Professional🇵🇷
Mayagüez Grief Counselling
A small team supporting chronic illness and living with hiv. Free first conversation, then low-cost sessions.
Mon to Fri, 9 to 5
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“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“Hello 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.”
tide_flame45 · been through rare disease“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