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- The Power of Advocacy Organizations (20:26, 25 February 2014)
- How to Use This Guide (14:40, 26 February 2014)
- How to Get Started (14:41, 26 February 2014)
- How to: Create a New Wiki Page (14:47, 26 February 2014)
- How to post a file on WikiAdvocacy (14:48, 26 February 2014)
- History of Advocacy Organizations and Genetic Alliance (14:51, 26 February 2014)
- The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates (14:54, 26 February 2014)
- Genetic Alliance (14:54, 26 February 2014)
- Determine Goals (14:55, 26 February 2014)
- Characterize Condition (14:55, 26 February 2014)
- Characterize Resources (14:56, 26 February 2014)
- Compare Goals and Resources, with the Characteristics of the Condition (14:56, 26 February 2014)
- Considering Starting a Support Group for a Condition that Already Has One? (14:56, 26 February 2014)
- Developing the Organization That Can Achieve Your Goals (14:57, 26 February 2014)
- NAC Best Practices (15:07, 26 February 2014)
- Becoming the Organization You Imagine (15:24, 26 February 2014)
- Individual Speaker Recommendations (15:27, 26 February 2014)
- Travel (15:28, 26 February 2014)
- Charity Rating Listings (15:29, 26 February 2014)
- Events (15:35, 26 February 2014)
- Financial Assets (15:35, 26 February 2014)
- Meet Your Neighbors & Organizations (15:36, 26 February 2014)
- Matching Resources (15:36, 26 February 2014)
- Information about Rare Genetic Diseases (15:42, 26 February 2014)
- Harnessing the Resources That Are Hard to Measure (15:46, 26 February 2014)
- How to Obtain Donated Office Space (15:48, 26 February 2014)
- Choosing an Internet Service Provider (15:48, 26 February 2014)
- Emergency Preparedness (15:49, 26 February 2014)
- Maintaining Computer Files (15:49, 26 February 2014)
- Maintaining Your Membership (15:52, 26 February 2014)
- Member Dues (15:57, 26 February 2014)
- Recruiting (16:00, 26 February 2014)
- Blogging (16:05, 26 February 2014)
- Advocacy Resources (16:08, 26 February 2014)
- Connecting Organizations (16:08, 26 February 2014)
- Advocacy Organizations List (16:09, 26 February 2014)
- Policy Tools & Resources (16:09, 26 February 2014)
- National Institutes of Health (NIH) (16:11, 26 February 2014)
- Internet Services (16:11, 26 February 2014)
- Legislation and Policy Advocacy (16:11, 26 February 2014)
- Phone Services: Going Beyond the Phone Tree (16:11, 26 February 2014)
- Protecting Member Privacy (16:12, 26 February 2014)
- Informal Offices or Regional Support Groups (16:13, 26 February 2014)
- Getting Needs on Government and Legislative Agendas (16:14, 26 February 2014)
- Getting an ICD-9 code added for your condition (16:14, 26 February 2014)
- Councils and Other Advisory Bodies (16:15, 26 February 2014)
- Translational Science (16:15, 26 February 2014)
- Research Models (16:18, 26 February 2014)
- Articles, Letters, and Other Media for Lay Publication (16:19, 26 February 2014)
- Press Kits (16:23, 26 February 2014)
- Publisher Recommendations (16:24, 26 February 2014)
- Starting Points for Planning Materials (16:24, 26 February 2014)
- Consumers and Researchers: Making It Work (16:27, 26 February 2014)
- Creating a Natural History Survey (16:27, 26 February 2014)
- Facilitating Quality Research (16:28, 26 February 2014)
- Funding Research by Others (16:28, 26 February 2014)
- Getting Needs onto the Research Agenda (16:29, 26 February 2014)
- Genetic Privacy (16:29, 26 February 2014)
- Promoting Research (16:29, 26 February 2014)
- Orphan Drug Application (16:30, 26 February 2014)
- Patient's Bill of Rights (16:30, 26 February 2014)
- Planning a Research Conference (16:32, 26 February 2014)
- Editing Practice (16:34, 26 February 2014)
- Media Tips (16:34, 26 February 2014)
- Recruiting Celebrities (16:35, 26 February 2014)
- Health care Providers and Specialists (16:35, 26 February 2014)
- Attending Professionals' Annual Meetings (16:36, 26 February 2014)
- Using Search Tools to Get Found (16:41, 26 February 2014)
- Advocacy (16:52, 26 February 2014)
- Internet Services: Websites, Chat Rooms, and Newsgroups (16:53, 26 February 2014)
- Protecting Message Boards from Spam (16:54, 26 February 2014)
- Education of Members, Providers, and the Public (16:56, 26 February 2014)
- Educating Your Membership about Research (16:57, 26 February 2014)
- Promoting Research on a Condition (16:58, 26 February 2014)
- Overview of WikiAdvocacy (16:59, 26 February 2014)
- Research Model 1: Recessive Disorder (16:59, 26 February 2014)
- Research Model 2: Chromosomal Disorder (17:00, 26 February 2014)
- Creating New Pages (17:00, 26 February 2014)
- Research Model 3: Dominant Disorder (17:00, 26 February 2014)
- Basic Formatting (17:00, 26 February 2014)
- Getting Your Needs on Government and Legislative Agendas (17:01, 26 February 2014)
- Cool Tips (17:02, 26 February 2014)
- Getting a Biobank or Registry Started (17:03, 26 February 2014)
- Biobank and Registry External Relations (17:03, 26 February 2014)
- Biobank and Registry Financial Management (17:03, 26 February 2014)
- Obtaining and Maintaining Registry Data (17:04, 26 February 2014)
- Registry and Biobank Ethics and Governance (17:04, 26 February 2014)
- Registry Questionnaires (17:05, 26 February 2014)
- Intended Goal (17:16, 26 February 2014)
- Getting Your Community Interested (17:18, 26 February 2014)
- Knowing Your Community (17:18, 26 February 2014)
- Accessibility of Tools (17:19, 26 February 2014)
- Available Resources (17:19, 26 February 2014)
- Additional/Supplemental Resources (17:20, 26 February 2014)
- Results and Individual Follow-up (17:20, 26 February 2014)
- Family Health History Initiative Guidelines (17:21, 26 February 2014)
- Preparing for and Handling Publicity (17:22, 26 February 2014)
- Choosing Internet Service Provider (17:22, 26 February 2014)
- National Awareness Day (17:24, 26 February 2014)
- Scholarships for your participants/families/members (17:32, 26 February 2014)
- Speaker selection and management (17:34, 26 February 2014)
- Novel Meeting Formats (17:36, 26 February 2014)
- Why Go There? (17:36, 26 February 2014)
- Funding (17:37, 26 February 2014)
- Leadership (17:37, 26 February 2014)
- Mentors (17:38, 26 February 2014)
- Expertise (17:39, 26 February 2014)
- Sharon F. Terry (17:47, 26 February 2014)
- Vision (17:53, 26 February 2014)
- Media Access (17:53, 26 February 2014)
- Celebrity Spokesperson (17:56, 26 February 2014)
- Working with a Lawyer (17:58, 26 February 2014)
- Setting up Useful Systems (18:00, 26 February 2014)
- State-Specific Issues (18:01, 26 February 2014)
- Attaining 501(c)(3) Status (Not-For-Profit Determination) (18:02, 26 February 2014)
- Accepting Donations (18:02, 26 February 2014)
- Working Full-Time on Nonprofit (18:04, 26 February 2014)
- Finding a Lawyer (18:09, 26 February 2014)
- Tax and Finance (15:14, 27 February 2014)
- Autopsies and Tissue Collection (16:21, 5 March 2014)
- Medical Records (16:25, 5 March 2014)
- Bylaws and Articles (17:02, 5 March 2014)
- Sibling Support (17:43, 5 March 2014)
- Resources for Nonprofits (17:46, 5 March 2014)
- Publications (17:47, 5 March 2014)
- General Resources (17:49, 5 March 2014)
- Fundraising Appeals (17:50, 5 March 2014)
- Consumer Medical Information (17:58, 5 March 2014)
- Children's Hopes and Dreams Foundations (18:01, 5 March 2014)
- Assistive Technology (18:07, 5 March 2014)
- Internet and Web Resources (18:19, 5 March 2014)
- Start Using WikiAdvocacy (15:17, 6 March 2014)
- Conference Call Services (12:50, 6 May 2014)
- Volunteer - Peer Coaches (18:58, 7 May 2014)
- FARA Q & A (19:06, 7 May 2014)
- Registry and Biobank Weekly Tips (19:07, 7 May 2014)
- FARA Patient Registry Q & A (19:08, 7 May 2014)
- Internet Services: Mailing Lists (19:18, 7 May 2014)
- Brochures and Fact Sheets (13:45, 29 October 2014)
- Newsletters and Bulletins (13:46, 29 October 2014)
- Your Organization's Name Is Important (14:46, 31 October 2014)
- Educating Membership about Research (14:37, 12 November 2014)
- Setting Up A National Conference (16:18, 8 December 2014)
- Disease Advocacy Organization(DAO) (14:28, 10 December 2014)
- Disease Advocacy Organization(DAO) Manual (16:00, 16 December 2014)
- PEER Portal (20:33, 23 December 2014)
- Overview (18:35, 23 January 2015)
- Genetic Alliance(GA) SOP (18:35, 23 January 2015)
- Webinars (19:14, 6 February 2015)
- Disease Advocacy Organization (DAO) Manual (16:52, 11 February 2015)
- Clinician- and Researcher-Focused Materials (19:29, 12 February 2015)
- Helping Your Membership Help Your Group (20:15, 23 February 2015)
- Internet Services: Listserv Guidelines Netiquitte Help (20:16, 23 February 2015)
- Financial and Summary Statement (18:53, 19 March 2015)
- Joint Fundraising (13:40, 12 August 2015)
- Fundraising/Third Party (19:33, 12 August 2015)
- BioBanks (14:51, 4 February 2016)
- Blood and Tissue Banks (14:53, 4 February 2016)
- Fundraising (01:09, 16 April 2016)
- International Offices (01:34, 16 April 2016)
- Accountants (00:37, 29 August 2016)
- Developing a Governance Board (01:55, 29 August 2016)
- Connecting Individuals (23:44, 30 August 2016)
- Audits (01:56, 14 December 2016)
- Functions of Advocacy Organization (18:01, 8 April 2018)
- Drug Development (18:24, 8 April 2018)
- Childcare (15:46, 15 April 2018)
- Advisory Boards (19:10, 20 June 2018)
- Ensuring Cultural Competence (19:47, 20 June 2018)
- Insurance and Policies (19:51, 20 June 2018)
- Donations (14:42, 22 June 2018)
- People and Roles (15:30, 22 June 2018)
- Best Practices (17:42, 22 June 2018)
- Dealing with Death (18:21, 22 June 2018)
- Resources for School Success (18:58, 22 June 2018)
- Family Health History (15:16, 17 July 2018)
- Volunteers (18:49, 30 July 2018)
- Working Remotely (18:50, 30 July 2018)
- Building a Website (18:55, 30 July 2018)
- Getting Grants (20:10, 30 July 2018)
- Taking Credit Cards on the Web (20:12, 30 July 2018)
- Donations from Canada/Outside the US (20:37, 30 July 2018)
- Social Networking (15:15, 1 August 2018)
- Support for Individuals and Families (15:23, 1 August 2018)
- Youth to Adult Transition Issues (15:49, 1 August 2018)
- Publicity and General Media (16:40, 1 August 2018)
- Barriers to Rare Disease Research (16:40, 2 August 2018)
- Benefits of Collaboration with Advocacy Organization Community (16:48, 2 August 2018)
- Main Page (17:06, 3 August 2018)
- Nonprofit Organization Sample Templates (17:26, 3 August 2018)
- State Registration (17:24, 20 September 2018)
- Challenges of 'Splinter Groups' (04:07, 20 March 2019)
- Registries (13:50, 8 October 2020)
- Staff (20:38, 17 January 2021)
- Genetic Alliance BioBank (06:25, 15 September 2021)
- Conferences, Workshops, and Meetings for Affected Individuals (02:09, 21 September 2021)
- Biobank Sample Collection (14:40, 25 March 2022)
- Defining Our Terms (03:30, 21 November 2023)