rare disease multi-stakeholder encouragement & knowledge communities

providing customized patient-centric services one rare disease at a time

a digital platform designed to coalesce the fractured nature of the rare disease community.

rarePolicyrareContribute rareConsultrareConnect

rareClinical rareCuraterareCourage

seven pillars. onevoice.

onevoice satisfies two primary unmet needs of patients with rare diseases: emotional support and access to knowledge

community meets knowledge

rareCourage combines the power of community with the power of knowledge. The rareConversation brings people together to share experiences, photos and thoughts, and to ask questions, seek advice, and provide support and encouragement.

as the conversation evolves, onevoice serves up relevant information and resources in the parallel rareRelated panel.

predictive information sharing

as members post in rareCourage, the rareRelated panel is simultaneously updated with curated information relevant to the conversation – it is called predictive information sharing – now that’s pretty cool.

encourage media and sentiment palette

onevoice’s +care button and Sentiment Palette allow the community to engage in encourage media, feeling comfortable sending hugs, thanks, or prayers appropriate to the situation.

post to the peer group, and receive related content hand-curated by experts

send more than just “likes”

uploading to the onevoice community

onevoice content is offered in a multitude of formats to meet member preferences and their specific information needs

hand-curated information by experts

onevoice knows there is a sea of information - and figuring out what is good is challenging enough, let alone what is good for each rare disease stakeholder. onevoice starts by scouring the internet using search algorithms customized for the rare disease. next, onevoice retrieves thousands of scientific articles, blog posts, videos, websites, and databases. then the onevoice curation group of experts sifts through it all and provides the community with hand-curated trustworthy information.

quality control & tagging

curation process

internal review for compliance

hand curation by content experts

machine curation using powerful searching tools

6 big buckets of information right-sized for consumption, all based in the science. rareCurate is the “one stop shop” for customized rare disease information.

clinical trial access, understanding, and knowledge are a critical element of the rare disease journey

clinical trial resource center

clinical trials provide pathways to new treatments and even cures – but the traditional information sources can be overwhelming, confusing, and stale. rareClinical provides an updated and interactive experience offering more convenient access to clinical trials.

access clinical trials worldwide

geolocate centers seeking participants

get answers fromexperienced people

create your rareTrial report

learn clinical trial basics and beyond

help shape the future of clinical research

rareClinical offers a convenient, user-friendly source for critical information related to clinical trials including practical functions

designed to breakdown the barriers to participation.

features encouraging participation

user-friendly interface with features for advanced engagement and stickiness

onevoice is designed to go beyond simple discussion boards. onevoice provides extraordinary value to its community members through awesome feature groups and gamification structures to promote loyalty, trust, engagement, and sharing.

member dashboard

the member dashboard is a customizable, feature-rich display of onevoice’s many content areas – all in one convenient landing pad. from here, members can see the latest conversations, content additions, new members, polling or questionnaire opportunities, and much more.

encouragement power. earn points by clicking.

encouragement power is a fun way to engage members and reward them for participation by allowing them to earn more colorful stripes for their profile and continue to build on their point totals for individual and community-based rewards!

earn your stripes:participate and saturate!

earn recognition as an influencer

rareQuestionnaires

onevoice makes answering surveys enjoyable and fun for the users – including allowing them to share their answers with the community and their rareTeam!

myBindermembers can micro-curate and save

saves any information for sharing with a member’s medical team, caregivers, or rare disease advocates!

start the conversation

throughout onevoice, members start conversations, share to social networks, or even add that content to “myBinder.”

the internet is a big place

the linkWheel makes it a bit smaller

the onevoice linkWheel allows members a convenient way to access lists of links to valuable resources – a result of discerning curation efforts across the web, including social media.

customizable categories – easy and fun to use

visualize the rare disease journey

my rareJourney displays the events along the way

members are invited to visualize their complex journeys in a longitudinal format, which allows for collection, analysis, and reporting of natural history data.

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committee oversightonevoice curation panel onevoice compliance

panel & client MLR or surrogate PRC

client MLR

business arrangement (aka level of involvement)educational grant

(no involvement)collaborative

(some involvement)post approval promotional

(greatest involvement)

Risk of Compliance Violation = minimal safeguards = increasing safeguards = maximum safeguards

rareCourageUser-generated Content (UGC)Opinion/Posts/CommentsImages/Videos/Links+care/sentiment paletteAdverse Event ReportingrareCurate

Evidence & Education

Hand-curated for youScientific ArticlesPublished GuidelinesPatient EducationAbstracts & PostersReference TextsPatient Education Materials

People & Places

Healthcare ProvidersHospitals/Medical CentersCommunity LeadersAdvocacy Groups

Social & Media

News & Meetings

Videos & Visuals

Research Grants

rareClinicalrareHUBTrial WizardProtocol PartnersMentor CenterEducation CenterRecruiting Near MeDashboardSurveys/PollsEncouragement Power scoremy rareProfilemy rareJourneyrareQuestionnairesadvertisingdata miningclient dashboardsponsored materials

activity/material/communication (AMC)

oversight & arrangement

compliance sensitivity & business structures

due to the heavily regulated nature of healthcare, an FDA & Healthcare Compliance Policy has been developed that discusses onevoice compliance sensitivity and potential business relationship structures to achieve client goals.

onevoice starts with a compliance assessment process to understand the factors influencing the risk profile (black box warnings, CIAs, DPAs, company policies). then onevoice works to build a client-sensitive curation policy to meet client and community needs.

onevoice solutions: creating online communities of extraordinary value

services tailored just for that rare disease

each onevoice is custom-designed to meet the specific requirements of a particular rare disease. marketing, curation, population, monitoring, and reporting services are customized for each deployment.

onevoice technology and service offerings include*

* detailed client discussions will determine what product and service offerings are selected, which determine overall cost.

technology offerings

3 pillars in v 1.0rarecourage

rarecuraterareclinical

integrated feature groupsmybinder

mydashboardclient dashboard

rareprofileprivacy matrix

maintenancepoint upgrades

bug fixes

new versions

technology related services

traininginternal onevoice staff

external curatorsinternal client staff

help deskchat operators

metrics & reporting

kick-off meeting compliance assessment goals

curation policy

encouragement power program

third-party rewards integration

content services

curationinitial

ongoing

custom curation policy (based on a compliance assessment)

community management & population

mentorship vettingugc monitoring

protocol partners

community research survey preparationrarequestionnaires

community poll development and reportsmy rarejourney creation

attraction & retention services

clearpharma.com onevoice.world 844.663.8642

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fits for client

• provides leadership opportunity in the rare disease space• establishes actional data insights

- user data- patient experience  data

• creates high community awareness & education• may reduce overall budget spend• enhances reputation in the rare community• demonstrates commitment to provide practical long-term, patient-centric solutions

for community members• addresses two primary unmet needs of community

- emotional support - disease knowledge

• provides “right-sized” education and awareness- focus on their particular rare disease - delivers information in formats desired by users - fosters dialogue through sharing features

• builds community- connects people across purposes - fosters peer support - creates collaboration opportunities

• establishes a trusted source of credible information hand-curated by medical, digital, and information experts