Uncategorized pages

Showing below up to 175 results in range #21 to #195.

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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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