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From WikiAdvocacy
- Accepting Donations
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- Attaining 501(c)(3) Status (Not-For-Profit Determination)
- Attending Professionals' Annual Meetings
- Audits
- Autopsies and Tissue Collection
- Available Resources
- Barriers to Rare Disease Research
- Basic Formatting
- Becoming the Organization You Imagine
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- BioBanks
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- Biobank and Registry External Relations
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- Blogging
- Blood and Tissue Banks
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- Building a Website
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- Celebrity Spokesperson
- Challenges of 'Splinter Groups'
- Characterize Condition
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- Childcare
- Children's Hopes and Dreams Foundations
- Choosing Internet Service Provider
- Choosing an Internet Service Provider
- Clinician- and Researcher-Focused Materials
- Compare Goals and Resources, with the Characteristics of the Condition
- Conference Call Services
- Conferences, Workshops, and Meetings for Affected Individuals
- Connecting Individuals
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- Considering Starting a Support Group for a Condition that Already Has One?
- Consumer Medical Information
- Consumers and Researchers: Making It Work
- Cool Tips
- Councils and Other Advisory Bodies
- Creating New Pages
- Creating a Natural History Survey
- Dealing with Death
- Defining Our Terms
- Determine Goals
- Developing a Governance Board
- Developing the Organization That Can Achieve Your Goals
- Disease Advocacy Organization(DAO)
- Disease Advocacy Organization(DAO) Manual
- Disease Advocacy Organization (DAO) Manual
- Donations
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- Drug Development
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- Educating Membership about Research
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- Education of Members, Providers, and the Public
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- General Resources
- Genetic Alliance
- Genetic Alliance(GA) SOP
- Genetic Alliance BioBank
- Genetic Privacy
- Getting Grants
- Getting Needs on Government and Legislative Agendas
- Getting Needs onto the Research Agenda
- Getting Your Community Interested
- Getting Your Needs on Government and Legislative Agendas
- Getting a Biobank or Registry Started
- Getting an ICD-9 code added for your condition
- Harnessing the Resources That Are Hard to Measure
- Health care Providers and Specialists
- Helping Your Membership Help Your Group
- History of Advocacy Organizations and Genetic Alliance
- How to: Create a New Wiki Page
- How to Get Started
- How to Obtain Donated Office Space
- How to Use This Guide
- How to post a file on WikiAdvocacy
- Individual Speaker Recommendations
- Informal Offices or Regional Support Groups
- Information about Rare Genetic Diseases
- Insurance and Policies
- Intended Goal
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- Internet Services: Listserv Guidelines Netiquitte Help
- Internet Services: Mailing Lists
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- Internet and Web Resources
- Joint Fundraising
- Knowing Your Community
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- Legislation and Policy Advocacy
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- National Awareness Day
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- Novel Meeting Formats
- Obtaining and Maintaining Registry Data
- Orphan Drug Application
- Overview
- Overview of WikiAdvocacy
- PEER Portal
- Patient's Bill of Rights
- People and Roles
- Phone Services: Going Beyond the Phone Tree
- Planning a Research Conference
- Policy Tools & Resources
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- Promoting Research
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- Protecting Member Privacy
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- Publications
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- Recruiting
- Recruiting Celebrities
- Registries
- Registry Questionnaires
- Registry and Biobank Ethics and Governance
- Registry and Biobank Weekly Tips
- Research Model 1: Recessive Disorder
- Research Model 2: Chromosomal Disorder
- Research Model 3: Dominant Disorder
- Research Models
- Resources for Nonprofits
- Resources for School Success
- Results and Individual Follow-up
- Scholarships for your participants/families/members
- Setting Up A National Conference
- Setting up Useful Systems
- Sharon F. Terry
- Sibling Support
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- Start Using WikiAdvocacy
- Starting Points for Planning Materials
- State-Specific Issues
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- Taking Credit Cards on the Web
- Tax and Finance
- The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates
- The Power of Advocacy Organizations
- Translational Science
- Travel
- Using Search Tools to Get Found
- Vision
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- Why Go There?
- Working Full-Time on Nonprofit
- Working Remotely
- Working with a Lawyer
- Your Organization's Name Is Important
- Youth to Adult Transition Issues
