Mission
Our mission is to connect people affected by extremely rare conditions, provide accessible and reliable information, and build a supportive community where no one feels alone in their diagnosis. To achieve that goal, we want to provide tools and guidance to help people navigate the problems they may face with their condition.
Vision
With our foundation we want to create an environment where individuals and families can find information and support about their condition – no matter where they live. We want to ensure that nobody feels alone on their journey, using approachable information and connecting through personal experiences.
How do we achieve this
1. Create community
- Facilitate support through websites and social media platforms.
- Creating a database where people can find understandable information about their condition.
2. Provide approachable information
- Develop dedicated websites for extremely rare conditions, starting with Poretti-Boltshauser Syndrome.
- Translate complex medical information into clear, understandable language.
- Contribute to public knowledge by creating Wikipedia entries.
3. Raise awareness & advocate
- Share stories via blogs, interviews, and social media.
- Collaborate with researchers and hospitals.
- Advocate for better understandable information about extremely rare conditions.
4. Support research & collaboration
- Provide medical experts with information so they can use it to help families.
- Help identify gaps in medical understanding and data collection.
- Spreading international knowledge about extremely rare conditions.
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@unique-connected.org
Websites:
www.porettiboltshausersyndrome.info
www.unique-connected.org