Charity🇳🇱
Hands Together Utrecht
Practical help for people dealing with caring for someone with dementia and rare disease, plus a weekly drop-in.
Evenings and weekends
Rare disease support in Netherlands
For people and families facing conditions few doctors have seen. Talk with people in Netherlands who know what it is like, find help near you, and join the worldwide circle too. Free, always.
Next gathering in the Netherlands circle: Weekly check-in ·
If you need someone right now
Help for rare disease in Netherlands
CharityLow cost🇳🇱
The Lantern Trust, Rotterdam
Practical help for people dealing with chronic illness and infertility and ivf, plus a weekly drop-in.
Evenings and weekends
Service🇳🇱
Utrecht Home Help
Practical help for people dealing with living with cancer and facing a terminal illness, plus a weekly drop-in.
Mon to Fri, 9 to 5
From people who came through it
“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“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. 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“If you've just found this place, I was in the same place in 2022. It was a Facebook group in another time zone and I couldn't see past it. I've started painting again. One day at a time.”
moonwest · been through rare disease