solutions for community membershow platform sponsors can benefit
emotional support through community

people affected by rare conditions may isolate, and feel "not normal" - we provide a safe monitored space for the entire supporting cast - not just the patient - to participate socially, meet new people and learn about the "new normal" of their conditions.

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rareCourage
trustworthy information curated by experts

rare disease information is often fractured and scattered; our developers and research teams create powerful algorithms to scour the internet for all types of disease information - from science to videos to blogs to news and events - and if it meets our quality criteria, our human content experts accept it into the knowledge area.

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rareCurate
simplifying clinical trials

clinical trials are complex and mysterious, but the desire to advance research is pure and simple; we take the difficulty out of understanding and finding clinical trials by providing the essential data points and easy-to-use tools to get matched with clinical trials near you.

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rareClinical
creating private spaces in the community

when people join the community, they are instantly "friends" with everyone else. we also understand some stuff should only be shared with a smaller group, so we allow each member to build a "private team" of people with whom that member wants to share, creating a personalized space for their information outside of the larger community.

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rareTeam
having it all in one space

members can have their knowledge, peeps, and clinical trials all in one place - making it "every rare disease patient's dream". members can save and share clinical trials and scientific papers with their doctors!

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rareBinder
visualize your rare journey

our members have a lot of wisdom to share and filling out forms is boring; we provide a fun way to answer some questions, upload some photos, even tell how they felt, which are all displayed in a cool timeline.

contact us to learn more about
rareJourney
how platform sponsors can benefit

our onevoice platforms can be customized and deployed to meet the particular needs of any rare disease community; from emotional support, curated knowledge and clinical trial information and tools, we can create a onevoice platform to meet any budget and business goals

learn more about our business solutions >
platform tools

abstracts & posters

abstracts & posters
we grab the the latest cutting edge research presented at medical conferences; keeping the community "in the know" of advances in treatments and cures

activity feed

activity feed
showing who is doing what allows members the permission to "jump in and take part"

advanced search

advanced search
members can laser focus their searches for targeted content that answers their questions

adverse event reporting

adverse event reporting
our software monitors every word posted by our community and we can ferret out AEs

advocacy group

advocacy group
we find the groups that are supporting the specific rare disease

anonymity

anonymity
given privacy concerns, we allow our members to be completely anonymous

apps

apps
we build them to solve problems specifically designed for that rare disease community's particular concerns

badges & games

badges & games
earn your stripes and play encouragement power! members can earn colored zebra strips and power points awarding deserved recognition to leaders and influencers

clinical science

clinical science
our experts choose only clinical research from human trials - no rats and mice in our platform!

clinical trials listing

clinical trials listing
existing resources are data vomit; we bring in just the right amount for easy understanding

community tote board

community tote board
members playing encouragement power have their "power" aggregated to the community and when the tote board hits a threshold - like 1,000,000 points - we roll out the rewards!

community wall

community wall
its the place where the community gathers and posts, replies, and engages with each other - we call it rareCourage

connect to cause

connect to cause
vibrant, positively charged community provides a connection to the cause and increases recruiting of others to the cause through rareTeams and powerful engagement experiences

connecting disparate groups

connecting disparate groups
so much duplication and redundancy; connecting groups in one central community fosters collaboration

crowd-sourced resources

crowd-sourced resources
avoid the static information common to web 1.0 sources; utilizing our searchSculpting techniques we update every day

data capture

data capture
our platforms are designed to understand individual behavior, community preferences, natural history, research insights - and so much more; we monitor it all to continue to deepen our knowledge of the community's unmet needs both inside the platform and outside research and services

discuss

discuss
we put all the content related discussion (like comments about a video or news story) in the community wall where others can continue the conversation

education center

education center
clinical trials are complicated; we have a visual learning center to understand the basics and ease the anxieties

empower communication

empower communication
mobile notifications provide awareness of communication among many many people; discarding one-to-one

engagement power

engagement power
we provide a game where members can earn power for simply using the site - they get "big bonus" power for completing questionnaires or other major activities; everyone's individual power is aggregated to the community for big rewards

events listing

events listing
find events - medical conferences, webinars, patient, advocacy & caregiver meetings - learn and connect live!

expertly curated information

expertly curated information
using our 12-step searchSculpting process, we first use algorithms to cast a wide net, and sift through the results by hand using experts - only the best makes it in

FDA compliance

FDA compliance
we've built onevoice in mind to be compliant with FDA guidances on User Generated Content and can customize to match any internal policies, CIAs or DPAs

guides & guidelines

guides & guidelines
the medical profession relies on these hotly debated and well-considered documents in providing care - we bring them in for your consideration

hashtags

hashtags
#awesome, #findcoolstuff, #anything

healthcare professional listing

healthcare professional listing
people need knowledgeable experts - for many different aspects of managing their condition - we include surgeons and specialists, but also genetic counselors, nutritionists, GPs - the categories are customized to suit that particular mix of support professionals and centers where they work

HIPAA secure

HIPAA secure
the technology and server architecture we employ is HIPAA compliant making onevoice a safe place

hugs / thanks / prayers

hugs / thanks / prayers
its hard to "like" some aspects of a rare disease journey, so we built appropriate sentiment buttons (before Facebook did!)

identify leaders

identify leaders
subject matter leaders are often isolated or under-resourced to spread their experience and advice; provide opportunities to share and create more leaders

insight analysis

insight analysis
we provide dashboard tools for real-time insights

insights to community

insights to community
by capturing discussions, usage metrics and questionnaires we can provide databases of quantified information for analysis to answer questions

lifestyle links

lifestyle links
we provide links to non-disease areas of life because rare disease patients "are not their disease, they are people first"

matching people & passion

matching people & passion
there's so much to do in a onevoice platform, people can find what suits them and excel at their passion

medical center listing

medical center listing
people need to know where to go to get treatment, seek opinions, connect with others, and get involved - we bring them the most active organizations and centers

member gallery

member gallery
get out of the isolation - when people meet people like them, their worlds change - find others in the gallery who want to meet and connect

member profiles

member profiles
a personal space for members to share about themselves with the community

mentor center

mentor center
clinical research is scary, but essential - we provide a safe space for interested newbies to connect with veterans to get answers and debunk myths around clinical trials

mobile friendly

mobile friendly
login to the software using a mobile browser and you've got it all right there in your hand on the go, or while waiting for an appointment!

multi-language

multi-language
our multi-instance, multi-language architecture allows us to roll out in any language

natural history visualization

natural history visualization
build your story one piece at a time, see it on a timeline and share it with others - see the success you've achieved and give others encouragement

new member welcome

new member welcome
new members are given a "starter pack" depending upon their profile role - patients get different information than doctors for example

news

news
not all the news, just the news relevant to that rare disease - we're about essentials, not volume

nominate content

nominate content
we don't know everything and the community can tell our experts about resources by nominating them for evaluation and acceptance to the databases

notifications & alerts

notifications & alerts
we notify you when stuff happens so you don't have to come and check all the time - making it easy to integrate into your daily life

patient education

patient education
we curate the good materials that people can and want to read, and discuss with the community

polls & questionnaires

polls & questionnaires
we are constantly building knowledge about our community and their needs and wants through polls and questionnaires

posts & replies

posts & replies
members can start conversations or engage in ongoing ones; they can post videos, links and photos!

private chat

private chat
it's something we all love -- just a quick private (or group) chat with your friends and care team on the platform

private teams

private teams
everyone is friends when they join, but members can create intimate and private rareTeams of their own supporters - invite friends, family and your healthcare professionals!

protocol development

protocol development
clinical trials have to be designed and researchers need your input to answer questions like "how far would you travel" and "would you come to the center more than once a month"

quick emoting

quick emoting
sometimes there is nothing more to say than a single word to express emotion - use our 18 button emotion palette to emote and move on!

reference materials

reference materials
we find great books, texts and resources for deep learners

related content

related content
members won't see ads next to their posts - we curated a ton of knowledge and we serve up links relevant to your posts instead - that's much more useful

robust filtering

robust filtering
even though we've curated, there is still a ton of information - get to what you want fast by using our filters

save what you find

save what you find
too much to keep track of? no problem, put anything - even conversations - into your 3-ring online binder, sharable with your doctor!

social sharing

social sharing
we provide simple sharing buttons for members to share out to their favorite social sites, but also to directly share with the community to start a conversation!

spam prevention

spam prevention
our team reviews all new accounts to make sure they are "real people"

summary homepage

summary homepage
we designed a modular member dashboard that people can customize to their own priorities of information

talk about it

talk about it
we want the discussions to happen where everyone can benefit so we have easy "discuss" buttons for members to start conversations about content at anytime!

top lists

top lists
leadership in the community is recognized by certain "Top Lists" like Top Posters Top Content and Top Videos

topic clouds

topic clouds
its easier to find information simply by the topic, so we provide popular topics for members to find what they're looking for

trial geolocator

trial geolocator
convenience is a primary consideration when choosing a clinical trial; we make it easy to find the ones nearest you

trials matching

trials matching
our wizard asks a few questions and whittles down the list of recruiting clinical trials for you - including providing phone and email contact interactive tools

two-way communication

two-way communication
eschewing the "telling" model of one-way marketing; adopting the progressive engagement model

user generated content

user generated content
this is a tech way of saying - sharing, posting and replying!

visual learning

visual learning
our members enjoy learning by watching videos, and we bring in the best ones, and also include infographics, slide decks, photos and more!

visualization timeline

visualization timeline
our members can build a timeline of their journey through life with a rare condition - and see it in a fun timeline format to share with others!

wall monitoring

wall monitoring
we make sure our members are insulated from inappropriate posts that violate the positively charged Code of Conduct using software and compassionate community managers

year round engagement

year round engagement
we remove the poor user experience hurdles existing in one-way information websites and facebook pages, and make participation easy and fun so people will integrate our solutions into their daily lives