sneak peek behind the curtain
while some diseases are rare, knowledgeable clinical medical experts can be even more rare. beyond verifying licenses, board certifications and medical experience, onevoice partners with the individual experts and institutional leaders to enable rare disease patients to engage in an online, real-time collaborative medical consultation.
you probably have loads of papers, lab results, and data piling up in folders or scanned into your laptop — that information can be put to good use for the community.
rareContribute let’s US based users upload your medical data into our HIPAA-compliant site — it’s all anonymous.
would you like the ability to ask a question from someone who has been through it already? maybe even just talk and share with someone who is like you?
onevoice gives you the chance to connect with similarly situated people – want to find another mom of a child with a rare disease? simply use the rareLink filters to pose that question to other moms on onevoice.
did you know that health insurers are legally restricted from discrimination based on genetic conditions? seriously, GINA says so – visit rarePolicy and learn about the Genetic Information Nondiscrimination Act and other legislative actions and which legislators are advancing rare disease solutions.
thinking of advocating for your rare disease? meet like-minded action-oriented people and learn how to spur on or join the movement for change.