- 17:00, 26 February 2014 diff hist +499 N Creating New Pages Created page with "You can create new pages by using "[[ ]]". Making a new page is very easy. '''Example''' If you want to create a page called '''Example,''' do the following: *In the editi..." current
- 17:00, 26 February 2014 diff hist +3,906 N Research Model 2: Chromosomal Disorder Created page with ":Jannine Cody, Ph.D. :Founder, Chromosome 18 Research Registry :Chairperson, Genetic Alliance This model for the Chromosome 18 Registry and Research Society evolved after man..." current
- 16:59, 26 February 2014 diff hist +4,746 N Research Model 1: Recessive Disorder 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
- 16:59, 26 February 2014 diff hist +2,036 N Overview of WikiAdvocacy Created page with "== Navigation Box (On the Left)== ;Main Page :The '''Main Page''' indicates the '''homepage''' of this site. We can go back to the Main Page '''by clicking the Main Page link'..." current
- 16:58, 26 February 2014 diff hist +4,746 N Promoting Research on a Condition 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
- 16:57, 26 February 2014 diff hist +6,467 N Genetic Alliance BioBank Created page with "==Genetic Alliance BioBank Executive Summary== Image:gabiobank.png The [http://www.biobank.org Genetic Alliance BioBank] was founded in 2003 by leaders in the research a..."
- 16:57, 26 February 2014 diff hist +2,566 N Educating Your 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..." current
- 16:56, 26 February 2014 diff hist +3,182 N Education of Members, Providers, and the Public Created page with "Advocacy organizations share information with more than their members. Particularly now that the web makes sharing information so much easier, an advocacy organization can be..." current
- 16:54, 26 February 2014 diff hist +2,925 N Protecting Message Boards from Spam Created page with "Organizations have faced issues with spam on their online forums and community message boards. Spam can come from either people or bots, so it is important to consider both wh..." current
- 16:53, 26 February 2014 diff hist +5,825 N Internet Services: Websites, Chat Rooms, and Newsgroups Created page with "Websites are discussed above, along with tips for choosing an ISP. ==Message Boards== Message boards are "threaded" online discussion forums where discussions can ensue with..." current
- 16:53, 26 February 2014 diff hist +14,875 N Internet Services: Mailing Lists Created page with "Internet services are important for advocacy organizations in the twenty-first century. They are relatively inexpensive services but critical ones for keeping the membership ..."
- 16:52, 26 February 2014 diff hist +2,107 N Advocacy Created page with "One of the functions of advocacy organizations, '''advocacy''' is explained in this section. ==Advocacy: Topics== *Getting Needs on Government and Legislative Agendas *[..." current
- 16:41, 26 February 2014 diff hist +5,107 N Using Search Tools to Get Found Created page with "You can be proactive about gathering new members via the Web. Make sure you are listed on all of the major databases on the Net. Genetic Alliance, NORD, Family Village, variou..." current
- 16:40, 26 February 2014 diff hist +6,397 N Internet and Web Resources Created page with "The Internet is probably the most valuable vehicle for gaining new members. There are a thousand techniques for using it effectively and beneficially. This guide will give y..."
- 16:36, 26 February 2014 diff hist +12,221 N Attending Professionals' Annual Meetings Created page with "Attending professional society meetings for the various specialties that your condition affects can be important for a number of reasons. You will learn more about the condit..." current
- 16:36, 26 February 2014 diff hist +762 N Start Using WikiAdvocacy Created page with "__FORCETOC__ == Register and Log in as a User== If this is your first visit to WikiGenetics, you should register as a user. Registering and logging in is not required, but it..."
- 16:35, 26 February 2014 diff hist +4,172 N Health care Providers and Specialists Created page with "Clinicians and specialists who deal with your condition can be very helpful. They can help you find affected individuals to become members. Clinicians cannot give you the na..." current
- 16:35, 26 February 2014 diff hist +3,489 N Recruiting Celebrities Created page with "Who among us wouldn't love a celebrity to champion our cause? We wouldn't wish our condition, or a connection to it, on anyone, but we still dream about knowing a famous pers..." current
- 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..."