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  1. Accepting Donations
  2. Accessibility of Tools
  3. Accountants
  4. Additional/Supplemental Resources
  5. Advisory Boards
  6. Advocacy
  7. Advocacy Organizations List
  8. Advocacy Resources
  9. Articles, Letters, and Other Media for Lay Publication
  10. Assistive Technology
  11. Attaining 501(c)(3) Status (Not-For-Profit Determination)
  12. Attending Professionals' Annual Meetings
  13. Audits
  14. Autopsies and Tissue Collection
  15. Available Resources
  16. Barriers to Rare Disease Research
  17. Becoming the Organization You Imagine
  18. Benefits of Collaboration with Advocacy Organization Community
  19. Best Practices
  20. BioBanks
  21. Biobank Sample Collection
  22. Biobank and Registry External Relations
  23. Biobank and Registry Financial Management
  24. Blogging
  25. Blood and Tissue Banks
  26. Brochures and Fact Sheets
  27. Building a Website
  28. Bylaws and Articles
  29. Celebrity Spokesperson
  30. Challenges of 'Splinter Groups'
  31. Characterize Condition
  32. Characterize Resources
  33. Charity Rating Listings
  34. Childcare
  35. Children's Hopes and Dreams Foundations
  36. Choosing Internet Service Provider
  37. Choosing an Internet Service Provider
  38. Clinician- and Researcher-Focused Materials
  39. Compare Goals and Resources, with the Characteristics of the Condition
  40. Conference Call Services
  41. Conferences, Workshops, and Meetings for Affected Individuals
  42. Connecting Individuals
  43. Connecting Organizations
  44. Considering Starting a Support Group for a Condition that Already Has One?
  45. Consumer Medical Information
  46. Consumers and Researchers: Making It Work
  47. Councils and Other Advisory Bodies
  48. Creating New Pages
  49. Creating a Natural History Survey
  50. Dealing with Death
  51. Defining Our Terms
  52. Determine Goals
  53. Developing a Governance Board
  54. Developing the Organization That Can Achieve Your Goals
  55. Disease Advocacy Organization(DAO)
  56. Disease Advocacy Organization(DAO) Manual
  57. Disease Advocacy Organization (DAO) Manual
  58. Donations
  59. Donations from Canada/Outside the US
  60. Drug Development
  61. Editing Practice
  62. Educating Membership about Research
  63. Educating Your Membership about Research
  64. Education of Members, Providers, and the Public
  65. Emergency Preparedness
  66. Ensuring Cultural Competence
  67. Events
  68. Expertise
  69. FARA Patient Registry Q & A
  70. FARA Q & A
  71. Facilitating Quality Research
  72. Family Health History
  73. Family Health History Initiative Guidelines
  74. Financial Assets
  75. Financial and Summary Statement
  76. Finding a Lawyer
  77. Functions of Advocacy Organization
  78. Funding Research by Others
  79. Fundraising
  80. Fundraising/Third Party
  81. Fundraising Appeals
  82. General Resources
  83. Genetic Alliance
  84. Genetic Alliance(GA) SOP
  85. Genetic Alliance BioBank
  86. Genetic Privacy
  87. Getting Grants
  88. Getting Needs on Government and Legislative Agendas
  89. Getting Needs onto the Research Agenda
  90. Getting Your Community Interested
  91. Getting Your Needs on Government and Legislative Agendas
  92. Getting a Biobank or Registry Started
  93. Getting an ICD-9 code added for your condition
  94. Harnessing the Resources That Are Hard to Measure
  95. Health care Providers and Specialists
  96. Helping Your Membership Help Your Group
  97. History of Advocacy Organizations and Genetic Alliance
  98. How to: Create a New Wiki Page
  99. How to Get Started
  100. How to Obtain Donated Office Space
  101. How to Use This Guide
  102. How to post a file on WikiAdvocacy
  103. Individual Speaker Recommendations
  104. Informal Offices or Regional Support Groups
  105. Information about Rare Genetic Diseases
  106. Insurance and Policies
  107. Intended Goal
  108. International Offices
  109. Internet Services
  110. Internet Services: Listserv Guidelines Netiquitte Help
  111. Internet Services: Mailing Lists
  112. Internet Services: Websites, Chat Rooms, and Newsgroups
  113. Internet and Web Resources
  114. Joint Fundraising
  115. Knowing Your Community
  116. Leadership
  117. Legislation and Policy Advocacy
  118. Main Page
  119. Maintaining Computer Files
  120. Maintaining Your Membership
  121. Matching Resources
  122. Media Access
  123. Media Tips
  124. Medical Records
  125. Meet Your Neighbors & Organizations
  126. Member Dues
  127. Mentors
  128. NAC Best Practices
  129. National Awareness Day
  130. National Institutes of Health (NIH)
  131. Newsletters and Bulletins
  132. Nonprofit Organization Sample Templates
  133. Novel Meeting Formats
  134. Obtaining and Maintaining Registry Data
  135. Orphan Drug Application
  136. Overview
  137. Overview of WikiAdvocacy
  138. PEER Portal
  139. Patient's Bill of Rights
  140. People and Roles
  141. Phone Services: Going Beyond the Phone Tree
  142. Planning a Research Conference
  143. Policy Tools & Resources
  144. Preparing for and Handling Publicity
  145. Press Kits
  146. Promoting Research
  147. Promoting Research on a Condition
  148. Protecting Member Privacy
  149. Protecting Message Boards from Spam
  150. Publications
  151. Publicity and General Media
  152. Publisher Recommendations
  153. Recruiting
  154. Recruiting Celebrities
  155. Registries
  156. Registry Questionnaires
  157. Registry and Biobank Ethics and Governance
  158. Registry and Biobank Weekly Tips
  159. Research Model 1: Recessive Disorder
  160. Research Model 2: Chromosomal Disorder
  161. Research Model 3: Dominant Disorder
  162. Research Models
  163. Resources for Nonprofits
  164. Resources for School Success
  165. Results and Individual Follow-up
  166. Scholarships for your participants/families/members
  167. Setting Up A National Conference
  168. Setting up Useful Systems
  169. Sharon F. Terry
  170. Sibling Support
  171. Social Networking
  172. Speaker selection and management
  173. Staff
  174. Start Using WikiAdvocacy
  175. Starting Points for Planning Materials
  176. State-Specific Issues
  177. State Registration
  178. Support for Individuals and Families
  179. Taking Credit Cards on the Web
  180. Tax and Finance
  181. The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates
  182. The Power of Advocacy Organizations
  183. Translational Science
  184. Travel
  185. Using Search Tools to Get Found
  186. Vision
  187. Volunteer - Peer Coaches
  188. Volunteers
  189. Webinars
  190. Why Go There?
  191. Working Full-Time on Nonprofit
  192. Working Remotely
  193. Working with a Lawyer
  194. Your Organization's Name Is Important
  195. Youth to Adult Transition Issues

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