ABOUT RARE & CHRONIC VOICES
Real people. Shared values. One mission.
Rare & Chronic Voices is an emerging international community for people living with rare and chronic conditions, their families, caregivers and supporters. We believe that every story matters and that no one should have to face illness alone.
Our Story
Founded from lived experience, our project began with a wish to connect people across diagnoses, countries and languages. We create space for honest stories, mutual understanding and supportive conversations.
Our Mission
- Connect: Build an inclusive international peer community.
- Share: Give personal experiences and patient stories a voice.
- Inform: Help people discover useful information and resources.
- Support: Explore practical assistance projects as our organization and resources grow.
Meet Our Team
Behind this project are people who care deeply about connection, dignity and mutual support. Our volunteer team is currently taking shape. We will introduce new team members once their roles are confirmed and they have agreed to be featured here.
Daniel Kraus
Founder & Project Lead
Living with Morbus Fabry has shaped Daniel’s understanding of the challenges people with rare conditions face. He founded Rare & Chronic Voices to help turn personal experience into connection, understanding and hope.
Our volunteer team is growing. We look forward to introducing more of the people behind Rare & Chronic Voices as their roles are confirmed.
Our Vision
We aim to grow a sustainable volunteer-led international community and, when the necessary organizational and legal structures are in place, explore a formal nonprofit structure and concrete assistance initiatives. These are future goals, not claims of current charitable status.
Get Involved
Whether you live with a condition, support someone who does, or want to contribute your skills, your voice is welcome.