- 16:34, 26 February 2014 diff hist +5,649 N Media Tips Created page with "When working with the media, keep the following tips in mind: ''There is no such thing as "off the record."'' "Off the record" means that you do not want a particular statem..." current
- 16:34, 26 February 2014 diff hist +270 N Editing Practice Created page with "==This is a practice page for editing== Feel Free to use this space for practice. == Internal Links == *Go back to Help: Contents *Start Using WikiAdvoca..." current
- 16:32, 26 February 2014 diff hist +4,181 N Planning a Research Conference Created page with "*Establishing the Planning Committee *Determining the parameters *Setting the agenda *Finding potential funding and applying **NIH R13 Conference Grant Mecha..." current
- 16:30, 26 February 2014 diff hist +3,857 N Patient's Bill of Rights Created page with "In 1997, President Clinton appointed an advisory commission to report on changes in the health care system and recommend measures to promote and assure health care quality and..." current
- 16:30, 26 February 2014 diff hist +12,595 N Orphan Drug Application Created page with "== The Orphan Drug Act == One of the largest obstacles to jump-starting research for a rare-disease drug therapy is the lack of financial incentive for the developer. Because..." current
- 16:29, 26 February 2014 diff hist +4,746 N Promoting Research Created page with "Encouraging research on a particular condition is not impossible—given the right ingredients. However, unlike a deli counter, you can't take a number and wait until the res..." current
- 16:29, 26 February 2014 diff hist +1,511 N Genetic Privacy Created page with "==HIPAA== [http://www.hhs.gov/ocr/hipaa/ The Health Insurance Portability and Accountability Act] includes some protections of fair and appropriate use of genetic information..." current
- 16:29, 26 February 2014 diff hist +1,328 N Getting Needs onto the Research Agenda Created page with "The most electrifying development in advocacy organizations for medical conditions is participating in, initiating, focusing and conducting research. Where organizations onc..." current
- 16:28, 26 February 2014 diff hist +5,346 N Funding Research by Others Created page with "What if you can't find anyone to work on your condition? There are very creative ways to encourage research on your condition. You can offer to work in the researcher's lab ..." current
- 16:28, 26 February 2014 diff hist +5,928 N Facilitating Quality Research Created page with "One of the primary reasons that advocacy organizations are formed is to find answers. If all the answers about treatment, management, and life with your condition were readil..." current
- 16:28, 26 February 2014 diff hist +2,566 N Educating Membership about Research Created page with "Your organization may focus mainly on support activities or fundraising. Even if you don't plan to conduct studies of any kind, your membership may wish to learn about and pa..."
- 16:27, 26 February 2014 diff hist +6,736 N Creating a Natural History Survey Created page with "Some organizations might want or need to create a family survey form to collect patient history information from their families. There are different ways you can create this t..." current
- 16:27, 26 February 2014 diff hist +4,087 N Consumers and Researchers: Making It Work Created page with "''Nancye Buelow was diagnosed with Alpha-1 (alpha-1 antitrypsin deficiency) in the spring of 1993 at the age of 40. She is presently the President of the Alpha-1 Association B..." current
- 16:26, 26 February 2014 diff hist +9,192 N Blood and Tissue Banks Created page with "A powerful way to consolidate your members' power to have an active role in research that truly benefits affected individuals is to create a repository for blood and tissue. ..."
- 16:25, 26 February 2014 diff hist +5,397 N Benefits of Collaboration with Advocacy Organization Community Created page with "There are creative examples of research studies whose protocol design, from the very beginning, encourage mutual commitment to, and shared responsibilities for, research tasks..."
- 16:25, 26 February 2014 diff hist +8,102 N Barriers to Rare Disease Research Created page with "From the Genetic Alliance's perspective, there are a number of significant, but not insurmountable, barriers to rare condition research: *Difficulty finding, enlisting and mai..."
- 16:24, 26 February 2014 diff hist +2,525 N Starting Points for Planning Materials Created page with "Many websites have a section called FAQ (frequently asked questions). Devised as introductions to the text-only discussions that preceded the web, these were simple collectio..." current
- 16:24, 26 February 2014 diff hist +825 N Publisher Recommendations Created page with "Now that you've created some great educational materials, where should you go to have them printed? Check out some of the recommendations below: *[http://www.gotprint.com Got..." current
- 16:23, 26 February 2014 diff hist +13,421 N Publicity and General Media Created page with "Publicity is a much sought after, and sometimes elusive, avenue to building membership. For organizations just starting out, and even those already established, it is importa..."
- 16:23, 26 February 2014 diff hist +1,704 N Press Kits Created page with "A press kit may be among the first educational materials you assemble after families are connected to each other. It's listed last here because it will contain examples of th..." current
- 16:22, 26 February 2014 diff hist +10,938 N Newsletters and Bulletins Created page with "Newsletters and bulletins are likely to be the first materials an advocacy organization creates. Outside of physical meetings, newsletters are one of the simplest ways to sha..."
- 16:22, 26 February 2014 diff hist +2,103 N Medical Records Created page with "==Keeping a Copy of Your Records== Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of medical your records inclu..."
- 16:21, 26 February 2014 diff hist +4,990 N Family Health History Created page with "''A peek into the past can reveal a lot about your future.'' Family health history is the story of diseases that run in your family. It is one part of the entire history of ..."
- 16:20, 26 February 2014 diff hist +2,639 N Clinician- and Researcher-Focused Materials Created page with "==Producing Material== Writing an article for a peer-reviewed scientific or medical journal can call attention to your organization in an important way. If you feel that you..."
- 16:20, 26 February 2014 diff hist +6,676 N Brochures and Fact Sheets Created page with "Brochures and fact sheets are typically an advocacy organization's first pieces to reach beyond organization membership. They also may be critical to disseminating accurate i..."
- 16:19, 26 February 2014 diff hist +2,036 N Articles, Letters, and Other Media for Lay Publication Created page with "Articles and letters in the lay media can create awareness of your condition, and that awareness can come back to you in many ways. It can reassure individuals with a connect..." current
- 16:19, 26 February 2014 diff hist +5,898 N Registries Created page with "Step by step start-up guide for registries and repositories This guide asks 53 questions about things to consider when creating a registry or repository. This guide is divide..."
- 16:19, 26 February 2014 diff hist +374 N Registry and Biobank Weekly Tips Created page with "Please visit the following pages for tips on how to manage a biobank and/or registry: *Getting a Biobank or Registry Started *Biobank and Registry External Relations ..."
- 16:18, 26 February 2014 diff hist +10,744 N Youth to Adult Transition Issues Created page with "Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals neg..."
- 16:18, 26 February 2014 diff hist +704 N Research Models Created page with "Research models are discussed in this section. *Research Model 1: Recessive Disorder *Research Model 2: Chromosomal Disorder *Research Model 3: Dominant Disorder ..." current
- 16:17, 26 February 2014 diff hist +8,559 N Support for Individuals and Families Created page with "==Support for Individuals and Families== Support for individuals and families takes many forms. The forerunners of today's advocacy organizations got their beginnings as supp..."
- 16:15, 26 February 2014 diff hist +19,515 N Social Networking Created page with "Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology in..."
- 16:15, 26 February 2014 diff hist +1,420 N Translational Science Created page with "==Definition== Translational science is scientific research that aims to develop practical material to help people. The term is used mostly used in the health sciences for met..." current
- 16:15, 26 February 2014 diff hist +2,682 N Councils and Other Advisory Bodies Created page with "==Councils and Other Advisory Bodies== Agencies and other associations often have opportunities for members of the public or for health advocates to participate in committees ..." current
- 16:14, 26 February 2014 diff hist +12,001 N Setting Up A National Conference Created page with "National conferences are a great way to engage with people from all different areas who share a common interest. Many advocacy organizations hold annual national conferences a..."
- 16:14, 26 February 2014 diff hist +1,633 N Getting an ICD-9 code added for your condition Created page with "'''Why the organization is requesting a code'''--usually because there isn't a specific code and this makes it very difficult for researchers studying the disorder/disease to ..." current
- 16:14, 26 February 2014 diff hist +4,037 N Getting Needs on Government and Legislative Agendas Created page with "==Alliances and Coalitions== Alliances and coalitions can bring many benefits back to your organization. They can offer visibility, yield networking opportunities, and creat..." current
- 16:13, 26 February 2014 diff hist +3,468 N Resources for School Success Created page with "School can be overwhelming for anyone, but with a little extra planning, fears can be eased for children with special healthcare needs and genetic conditions. Check out some o..."
- 16:13, 26 February 2014 diff hist +4,648 N Informal Offices or Regional Support Groups Created page with "==Examples of Suggestions for Local/Regional Offices and Support Groups:== ===PXE International, Inc.=== PXE International, Inc.'s mission is two fold: to support patients and..." current
- 16:12, 26 February 2014 diff hist +3,056 N Protecting Member Privacy Created page with "Your work with individuals and families whose lives have been touched by genetic conditions naturally will lead you into situations you may not anticipate. For example, you m..." current
- 16:11, 26 February 2014 diff hist +5,421 N Phone Services: Going Beyond the Phone Tree Created page with "Back in the old days, everyone got a phone list, and a shortlist of people they were assigned to. When the big news came in, one person received it and called three people—..." current
- 16:11, 26 February 2014 diff hist +797 N Legislation and Policy Advocacy Created page with "==Legislative Reform== One way that an advocacy group can reach the public is by interacting with legislation to ensure better laws for the public. One example of this kind o..." current
- 16:11, 26 February 2014 diff hist +578 N Internet Services Created page with "==Internet Services: Topics== *Internet Services: Mailing Lists *Internet Services: Websites, Chat Rooms, and Newsgroups *Protecting Message Boards from Spam ==In..." current
- 16:11, 26 February 2014 diff hist +8,098 N National Institutes of Health (NIH) Created page with "==National Institutes of Health (NIH)== The NIH is one of the eight agencies of the Public Health Service, a part of the United States Department of Health and Human Services..." current
- 16:09, 26 February 2014 diff hist +4,196 N Policy Tools & Resources Created page with "==Policy Tools & Resources== One of the most important parts of advocacy is enacting policy. To do so, there are many methods of outreach that one may use to reach policymaker..." current
- 16:09, 26 February 2014 diff hist +3,877 N Dealing with Death Created page with "Organizations often struggle with how to provide for families who have lost a loved one to the condition and still offer hope to the families who are struggling to hang on to ..."
- 16:09, 26 February 2014 diff hist +3,135 N Advocacy Organizations List Created page with "*[http://www.aota.org/ American Occupational Therapy Association] :A professional organization of over 50,000 practitioners dedicated to providing services to individuals wit..." current
- 16:08, 26 February 2014 diff hist +977 N Connecting Organizations Created page with "Sometimes, advocacy organizations hope to improve and/or connect local organizations to form a larger network of support across the nation. One example of this is the [http://..." current
- 16:08, 26 February 2014 diff hist +1,701 N Advocacy Resources Created page with ";[http://www.usdoj.gov/crt/ada/ Americans with Disabilities Act (ADA) Home Page] :Information and Technical Assistance on the ADA :Phone: 800.514.0301 :Fax: 202.514.6193 ;[h..." current
- 16:08, 26 February 2014 diff hist +6,269 N Connecting Individuals Created page with "==International Contacts/Support Groups== The world is no longer divided with big barriers between countries. The Internet provides for all of us access to the whole world..."
