Connecting unique minds around the world!
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.
No one should feel invisible just because their condition is rare.
Through connection, we create a space where everyone feels seen, heard, and supported.
Creating awareness
Share patient stories and expert insights via blogs, interviews, and social media.
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.
How it started
I started with the website porettiboltshausersyndrome.info, to provide more people with information. People commented on the website as it being a useful resource to show family and friends, and said the information on it was clear and helpful. The website has become a support for many people and the Facebook support group gets new members every few weeks. Families are connecting through that page, asking questions and feeling like they are not alone. Even though their condition is super rare, they are not alone.
