Part 2: Assessment and Development
From WikiAdvocacy
Part II has two pieces. The first is a series of exercises to help you assess the current status of your organization. The second is a series of articles about ways you can develop, grow, and support your organization.
[edit] Assessment
- Introduction
- Step 1: Determine your goals
- Step 2: Characterize the condition
- Step 3: Characterize your resources
- Leadership
- Mentors
- Volunteers
- What expertise do you need?
- Defining your organization's vision
- Sources of funding
- Event-based fundraising
- Community and Media Access
- Step 4: Compare your goals and your resources, with the characteristics of the condition
[edit] Development
Structure
- Developing the Organization That Can Achieve Your Goals
- Your Organization's Name Is Important
- Developing a Governance Board
- Developing Bylaws and Articles of Organization
- Developing Professional Advisory Board
- Tax and Finance: Setting up Useful Systems
- Tax and Finance: Financial and Summary Statement
- Tax and Finance: State-Specific Issues
- Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)
- Tax and Finance: Accepting Donations
- Tax and Finance: Filing 990 IRS Forms
- Tax and Finance: Audits
- Finding a Lawyer
- Working with a Lawyer
Resources
- Helping Your Membership Help Your Group
- Recruiting: Publicity and General Media
- Genetic Alliance's Media Tips
- Recruiting: Celebrities
- Recruiting: Health care Providers and Specialists
- Recruiting: Attending Professionals' Annual Meetings
- Recruiting: Internet and Web Resources
- Choosing an Internet Service Provider
- Taking Credit Cards on the Web
- Recruiting: Using Search Tools to Get Found
- Maintaining Your Membership
- Becoming the Organization You Imagine
- Getting Grants
- Donations
- Member Dues
- Events
- Celebrity Spokesperson
- People and Roles
- Harnessing the Resources That Are Hard to Measure
Functions
Support
- Support for Individuals and Families
- Conferences, Workshops, and Meetings for Affected Individuals
- Connecting Individuals
- Internet Services: Mailing Lists
- Internet Services: Websites, Chat Rooms, and Newsgroups
- Phone Services: Going Beyond the Phone Tree
- Protecting Member Privacy
- Dealing with Death
- Autopsies and Tissue Collection
Education
- Education of Members, Providers, and the Public
- Starting Points for Planning Materials
- Newsletters and Bulletins
- Brochures and Fact Sheets
- Articles, Letters, and Other Media for Lay Publication
- Clinician- and Researcher-Focused Materials
- Press Kits
Research
- Getting Your Needs onto the Research Agenda
- Educating Your Membership about Research
- Patient's Bill of Rights
- Genetic Privacy
- Promoting Research on a Condition
- Funding Research by Others
- Barriers to Rare Disease Research
- Consumers and Researchers: Making It Work
- Benefits of Collaboration with Advocacy Organization Community
- Facilitating Quality Research
- Research Model 1: Recessive Disorder
- Research Model 2: Chromosomal Disorder
- Research Model 3: Dominant Disorder
- Blood and Tissue Banks
- Genetic Alliance BioBank
Advocacy
- Getting Your Needs on Government and Legislative Agendas
- National Institutes of Health (NIH)
- Councils and Other Advisory Bodies
Now What?
