Part II of the Genetic Alliance Interactive Guide

Part II: Assessment and Development

Part II has two pieces. The first is a series of exercises so you can assess the current status of your organization. The second is a series of articles about ways you can develop, grow, and support your organization.

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

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 Boards
Tax and Finance: Setting up Useful Systems
Tax and Finance: Financial and Summary Statements
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: Healthcare 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
Your Organization's Functions
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 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
Getting Your Needs onto the Research Agenda
Educating Your Membership about Research
Patient's Bill of Rights
Genetic Privacy
Promoting Research on a Disease
Funding Research by Others
Barriers to Rare Disease Research
Consumers and Researchers: Making It Work
Benefits of Collaboration with Lay Advocacy Group Community
Facilitating Quality Research
Research Model 1: Recessive Disorder
Research Model 2: Chromosomal Disorder
Research Model 3: Dominant Disorder
Blood and Tissue Banks
The Genetic Alliance BioBank
Getting Your Needs on Government and Legislative Agendas
Legislative Issues
National Institutes of Health (NIH)
Councils and Other Advisory Bodies

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 Disease
Funding Research by Others
Barriers to Rare Disease Research
Consumers and Researchers: Making It Work
Benefits of Collaboration with Lay Advocacy Group Community
Facilitating Quality Research
Research Model 1: Recessive Disorder
Research Model 2: Chromosomal Disorder
Research Model 3: Dominant Disorder
Blood and Tissue Banks
The Genetic Alliance BioBank

Advocacy
Getting Your Needs on Government and Legislative Agendas
Legislative Issues
National Institutes of Health (NIH)
Councils and Other Advisory Bodies

Now What?
Bringing It Home

Privacy Policy - Disclaimer - Funding
Maintained by the Genetic Alliance.
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups.

Send feedback about the Interactive Guide.

SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!

AN INTERACTIVE GUIDE TO BUILDING ADVOCACY GROUPS
Part II
Part I: Learn some of the history of advocacy organizations and how to use this guide This is Part II: Activities for assessing your organization and tips for building it Part III: Resources and contact information for groups and tools that can help you build your organization	Part II: Assessment and Development Part II has two pieces. The first is a series of exercises so you can assess the current status of your organization. The second is a series of articles about ways you can develop, grow, and support your organization. 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 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 Boards Tax and Finance: Setting up Useful Systems Tax and Finance: Financial and Summary Statements 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: Healthcare 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 Your Organization's Functions 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 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 Getting Your Needs onto the Research Agenda Educating Your Membership about Research Patient's Bill of Rights Genetic Privacy Promoting Research on a Disease Funding Research by Others Barriers to Rare Disease Research Consumers and Researchers: Making It Work Benefits of Collaboration with Lay Advocacy Group Community Facilitating Quality Research Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant Disorder Blood and Tissue Banks The Genetic Alliance BioBank Getting Your Needs on Government and Legislative Agendas Legislative Issues National Institutes of Health (NIH) Councils and Other Advisory Bodies 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 Disease Funding Research by Others Barriers to Rare Disease Research Consumers and Researchers: Making It Work Benefits of Collaboration with Lay Advocacy Group Community Facilitating Quality Research Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant Disorder Blood and Tissue Banks The Genetic Alliance BioBank Advocacy Getting Your Needs on Government and Legislative Agendas Legislative Issues National Institutes of Health (NIH) Councils and Other Advisory Bodies Now What? Bringing It Home Privacy Policy - Disclaimer - Funding Maintained by the Genetic Alliance. The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups. Send feedback about the Interactive Guide. SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you! Powered by Movable Type 2.661	Join the Genetic Alliance MemberForum email list! Learn about Genetic Alliance's Train the Trainer Workshop - and how you can learn to train others in your organization.