We are a group of people who started with dan’s passion that through collaboration and customization, we can build better communities that provide emotional support, enhance knowledge and advance science through clinical trials. Enjoy our communities – and if you don’t find one that suits you, please contact us and we can chat about building one for your group!
Join a onevoice community today, and get the benefits of meeting other similarly situated people and have access to vetted knowledge & clinical trials. Our communities are tailored for a specific disease so you’ll meet and get insights from people who have veteran experience in that particular disease.
It is hard to do research in a rare disease – even harder to know what to read or watch and figure out what’s credible and what’s bunk! Our guided communities have knowledgeable experts who hand-curate written and visual information including science, videos, interviews and our linkWheel™. Just the good stuff gets in!
Our guided communities make it easier to advance science and the search for treatments by offering clinical trial information including a tool that matches people with trials that are actively recruiting. Visit the clinical trial education center for videos on what it means to participate in a trial, and get answers to many typical questions.
Have you ever wanted to see your challenges, experiences and triumphs with rare disease over time? Or print it for support professionals rather than going through it “all over again” with each new doctor or counselor? myrareJourney™ is your private space to upload photos, videos, hashtags and emotions about all aspects of your experiences and life!
Make the choice to share your rareJourney with other rareJourney members, researchers and even your own support team. We can give you all sorts of “hints” ranging from videos to watch, clinical trials to join, treatments to discuss with your doctor and so, so, so much more!
We understand your healthcare information is important to keep safe and private. We employ cloud-based technology that complies with HIPAA requirements so your information is secure.