the power of
“I was frustrated by the fractured nature of the rare disease ecosystem, and knew we could do better.
Welcome to onevoice.”
onevoice provides a space for encouragement, knowledge and collaboration in rare diseases among patients, caregivers, advocates, healthcare professionals and researchers.
FAPvoice sitejoin the community
seven pillars. onevoice.
onevoice provides a powerful community and knowledge platform for people within the rare disease ecosystem. the platform is powered by seven feature groups, each serving unmet needs of the multi-stakeholder community.
“On those nights in the hospital when I felt all alone, there were actually hundreds of passionate voices rooting for me and my daughter, just a few clicks away.”
Tina, mother of neuroblastoma patient
onevoice has created the first “encourage media” platform. our rareCourage pillar enables the community to show they care by sending and receiving expressions appropriate for the rare disease patient journey using our SENTIMENT PALETTE and +care button.learn more
onevoice experts have identified valuable traditional sources for scientific evidence, patient education, clinical trials, medical conferences, and new media sources such as social media, streaming video, patient blogs, slide decks and imaging boards.
we scour the landscape and bring into onevoice the good stuff – we even provide information “starter kits” for people new to the disease – whether patient, physician, caregiver, or advocate. our curators build a positively-charged online rare disease patient-centric disease and treatment awareness community.
“When you hear hoofbeats, think of horses, not zebras.”
– Dr. Theodore Woodward, University of Maryland School of Medicine, roughly the 1950s
this aphorism has come to associate the zebra with rare diseases in medical culture; because on a rare occasion when you hear hoof beats, it isn’t a horse it is a zebra.
onevoice, like others in the rare community, has adopted zebra stripes to symbolize the power of encouragement within the rare disease community.