- 17:22, 26 February 2014 diff hist +3,618 N Choosing Internet Service Provider Created page with "Your choice of an Internet service provider (ISP) is an important one. Examine your needs and shop around for a reliable host that fits your budget. The basic considerations..." current
- 17:22, 26 February 2014 diff hist +3,697 N Preparing for and Handling Publicity Created page with "We've had a few national features and there was a great difference in the response for each. The New York Times article that was published about our illness and organization ..." current
- 17:21, 26 February 2014 diff hist -35 Family Health History Initiative Guidelines current
- 17:20, 26 February 2014 diff hist +3,104 N Results and Individual Follow-up Created page with "==Is risk assessment included in the tool?== Risk assessment is an important factor for audiences to decide whether collecting family health history may be a good idea for the..." current
- 17:20, 26 February 2014 diff hist +7,565 N Additional/Supplemental Resources Created page with "==Treatments for conditions== Treatments for health conditions vary from condition to condition. They can range from simply taking a pill daily to receiving intensive care in..." current
- 17:19, 26 February 2014 diff hist +4,764 N Available Resources Created page with "==Is funding available for printing?== If your tool produces physical materials, you may need to consider where to draw money in order to print and distribute them. Grants ma..." current
- 17:19, 26 February 2014 diff hist +7,861 N Accessibility of Tools Created page with "==Is the tool available in the correct languages?== Knowing the background of your community members will help you determine if the tool is available in most or all of the lan..." current
- 17:18, 26 February 2014 diff hist +8,241 N Knowing Your Community Created page with "==How accessible are health care facilities?== If members of your community are unable to utilize the health care facilities in the area, they will be less likely to follow up..." current
- 17:18, 26 February 2014 diff hist +7,917 N Getting Your Community Interested Created page with "Once you have determined who your audience is and what your goals are, it's time to implement the initiative! But how do you get the members of your community to take an inte..." current
- 17:16, 26 February 2014 diff hist +6,277 N Intended Goal Created page with "Starting a broad family health history initiative in your community can be daunting. If you don't know where to begin, this section is the perfect place to get your bearings...." current
- 17:16, 26 February 2014 diff hist +1,369 N Family Health History Initiative Guidelines Created page with "The information here is based on a manual that the [http://www.geneticalliance.org/ws_display.asp?filter=fhh.coalition Coalition for Accessible Family Health History Tools] is..."
- 17:05, 26 February 2014 diff hist +4,781 N Registry Questionnaires Created page with "==Questionnaires== ===Registry Questionnaire Design and Data Standardization=== When developing a registry questionnaire, it is useful to incorporate standardized data colle..." current
- 17:04, 26 February 2014 diff hist +9,561 N Registry and Biobank Ethics and Governance Created page with "==Ethics and Governance== ===Research Ethics and Stewardship=== With any registry or biobank, you are conducting a research study, and research ethics are an important consi..." current
- 17:04, 26 February 2014 diff hist +7,643 N Obtaining and Maintaining Registry Data Created page with "==Evaluating Information== With any complex endeavor, such as a registry or biobank, we often gather information from multiple sources, including the Internet, journal articl..." current
- 17:04, 26 February 2014 diff hist +9,901 N Biobank Sample Collection Created page with "==Sample Collection== As you are planning your resource, you will to need determine if your collection will include biologic samples now or in the future. Collecting biologic..."
- 17:03, 26 February 2014 diff hist +5,345 N Biobank and Registry Financial Management Created page with "===Finances=== ====Developing a Budget==== As with any program initiative, it is important to develop a working budget. With a registry or biobank, it is essential to consi..." current
- 17:03, 26 February 2014 diff hist +19,047 N Biobank and Registry External Relations Created page with "==Utilizing Vendors and Partnerships== ===Vendor Selection=== Organizations with registries and biobanks typically work with vendors. It is unlikely that you will have the e..." current
- 17:03, 26 February 2014 diff hist +13,141 N Getting a Biobank or Registry Started Created page with "==Advocacy Organizations and Research Initiatives== The current system of academic research and rewards is fractured and unable to facilitate true collaboration and sharing. ..." current
- 17:02, 26 February 2014 diff hist +1,228 N Cool Tips Created page with "Let's put some cool techniques together so that we can use WikiAdvocacy more easily. == 25px + F == When you are looking for a specific phrase or word..." current
- 17:01, 26 February 2014 diff hist +4,037 N Getting Your 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
- 17:00, 26 February 2014 diff hist +4,649 N Basic Formatting Created page with "You can edit any pages by clicking the edit tab at the top of the page. You need to use wiki syntax for: *'''bold''' *''Italic'' *'''''bold and Italic''''' *[[Internal Link]..." current
- 17:00, 26 February 2014 diff hist +3,405 N Research Model 3: Dominant Disorder Created page with ":Vicky Whittemore :Tuberous Sclerosis Alliance Research is performed by the advocacy organization together with the researcher(s). '''Mission''': The Tuberous Sclerosis All..." current
- 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
