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Unique & Connected
Connecting unique minds around the world.
No one should feel invisible just because their condition is rare.
Through connection, we create a space where everyone
feels seen, heard, and supported.
Our mission
We offer recognition, hope, and resources to people living with extremely rare genetic syndromes – and to the families who walk along.
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.
Goal & mission
We envision a world where individuals and families navigating extremely rare conditions can find each other, share knowledge, and access support — no matter where they live. By combining digital tools, social media, and real-life connections, we aim to break the isolation that often comes with a rare diagnosis.