Disease Advocacy Organization (DAO) Manual

The following is the overview your DAO would have to take to successfully setup and launch a White Label Package connected through the PEER portal

DAO-Flowchart

Initial Consultation with the PEER Team

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Before you start to develop your PEER portal it's important to have a clear direction for your project. Here and in our initial consultation we'll tell you a bit more about why we've created PEER, and share some key points for developing and clarifying your vision.

About PEER

PEER creators Genetic Alliance and Private Access designed PEER with a central question in mind: how can we help you and your community to transform health?

Setting up the PEER Portal

To be updated...

Timeline

To be updated...

Pre-Outreach Efforts

Katherine - move Renee content

PEER Portal Design Decisions

To be updated...

Content and User Interface(UI)

Katherine - wait for new system?

Videos & Guides Development

Tanya

Survey Questions and Development

Wayne

Question Formatting

Wayne

Using the PEER Questions Manager

Wayne

Editing Survey Questions

Wayne

Setting Up User Support System (Customer Support)

Tanya

Selected Audience Survey Testing

Katherine

Launch

To be updated...

Launch and Post-Launch Outreach and Community Engagement

Erika adapting Renee

File:Outreach and Engagement (version).docx

SEE ATTACHED DOCUMENT FOR ADDITIONAL DETAILS

Group Projects: Project Focus and Goals

Internally determine project focus and goals

Assign tangible outcomes (ie goal for how many members of your community you want to reach out to and what percent you can enroll in the registry)

Strengths and Weaknesses for the following

• Outreach

• Partnerships

• Participation of community members

Understand the community’s perceptions of data sharing

Launch Day Checklist

Post Launch Continuous Outreach

• Frequency and reach are important to grabbing the attention of participants

• Outreach to member patients

• Social media, listservs and other groups

• All types of mail

• Utilize thought leaders in your membership

• Ask members to help

• In-person meetings & Webinars

• Your organization can conduct events directly related to your project (Launch party, Schedule Day)

• Videos and YouTube

• Outreach to non-members (potential participants)

• Events

• Social media, listservs, and other groups: 'For Groups that are Building Up or New to Social Media AND For Groups that are Experienced with Social Media'

• Media

• Strategies for reaching out to blogs and other internet posts

• For Organizations that are New to Paid Advertisement:

• Unpaid advertisements

• Find and contact potential partners

• Using Referral Codes

• Messaging

Research & Data

To be updated...

Additional Surveys & Updates

To be updated...

User Support

Wayne (eventually)