💙 Mission
Our mission is to connect people affected by ultra-rare genetic conditions, provide accessible and reliable information, and build a supportive community where no one feels alone in their diagnosis.
👁️ Vision
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.
🎯 What We Do
1. Create Community
- Facilitate peer support through private Facebook groups, online meetings, and eventually local meetups.
- Build safe spaces for families, caregivers, and patients to connect and exchange experiences.
2. Provide Reliable Information
- Develop dedicated websites for ultra-rare conditions, starting with Poretti-Boltshauser Syndrome.
- Translate complex medical information into clear, understandable language.
- Contribute to public knowledge by creating Wikipedia entries and fact sheets.
3. Raise Awareness & Advocate
- Share patient stories and expert insights via blogs, interviews, and social media.
- Organize events for Rare Disease Day and collaborate with researchers and hospitals.
- Advocate for better recognition and understanding of ultra-rare conditions.
4. Support Research & Collaboration
- Connect medical experts and affected families to encourage research.
- Help identify gaps in medical understanding and data collection.
- Promote international knowledge exchange.
💬 Our Story
This initiative started with a personal journey — searching for answers after a rare diagnosis, and finding very little support or information. From this challenge, a purpose emerged: to ensure others don’t have to face the same journey alone.
Today, our community is growing steadily, starting with Poretti-Boltshauser Syndrome and expanding.
🌍 Join Us
Whether you’re a patient, caregiver, medical professional, or simply someone who wants to help — you’re welcome here.
Let’s build a network of hope, understanding, and strength — together.
📧 Contact: alissa@alissaschrijft.nl
🔗 Websites: www.porettiboltshausersyndrome.info
www.unique-connected.org