Verbonden door verschil
I am hosting an AMA on Reddit on 2 december with username u/AlissaAppeltjes. Go to r/IAmA to ask questions!
https://www.reddit.com/r/IAmA/comments/1pcckuq/my_name_is_alissa_and_i_have_poretti_boltshauser/
Who are we and what do we do?
The foundation Unique and Connected has been founded to help people navigate through all the information, or rather the lack of it, on the internet about extremely rare syndromes.
We want to inform people, connect people and let people know that they are not alone, no matter how rare the syndrome they have!
Check out our other pages on this website to see more about what it is we do.
Making people feel seen
Build safe spaces for families, caregivers, and patients to connect and exchange experiences.
Spreading information
Develop dedicated websites for ultra-rare conditions, starting with Poretti Boltshauser Syndrome.
Creating awareness
Share patient stories and expert insights via blogs, interviews, and social media.
What do we believe?
No one should feel invisible just because their condition is rare.
Through connection, we create a space where everyone feels seen, heard, and supported.
