- 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..."
- 16:07, 26 February 2014 diff hist +3,168 N Assistive Technology Created page with ";[http://www.abledata.com/ AbleData] :This website is part of the National Institute on Disability and Rehabilitation Research, US Department of Education. Provides informati..."
- 16:07, 26 February 2014 diff hist +2,725 N BioBanks Created page with "== Organizations == ;[http://www.biobankcentral.org/ BioBank Central] :Provides an overall description of biobanking including why biobanks are needed and how they work. :emai..."
- 16:05, 26 February 2014 diff hist +2,944 N Blogging Created page with "Blogging is a way for organizations to present information in an article or journal format. Blogging is used for a variety of topics, and it can also give site visitors the op..." current
- 16:05, 26 February 2014 diff hist +11,753 N Conferences, Workshops, and Meetings for Affected Individuals Created page with "Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of commun..."
- 16:05, 26 February 2014 diff hist +3,535 N Children's Hopes and Dreams Foundations Created page with ";[http://www.believeintomorrow.org/ Believe in Tomorrow National Children's Foundation] :Helps children with life-threatening illnesses through three programs: Children’s Ho..."
- 16:03, 26 February 2014 diff hist +2,755 N Best Practices Created page with "Below is a list of resources for best practices. Each of these genetic disorders have best practices associated with them, however it is often hard to find all of the reliabl..."
- 16:03, 26 February 2014 diff hist +3,839 N Autopsies and Tissue Collection Created page with "Another difficult situation for families is deciding whether to make a loved one's body available for autopsy. Autopsy, once a routine practice in American medicine, is becom..."
- 16:02, 26 February 2014 diff hist -498 General Resources
- 16:02, 26 February 2014 diff hist +4,099 N Functions of Advocacy Organization Created page with "An advocacy organization can have a variety of functions, from an informal network in which parents give each other moral support to a sophisticated formal organization, which..."
- 16:00, 26 February 2014 diff hist +5,706 N Taking Credit Cards on the Web Created page with "You have several options for taking credit cards on the Web. They fall into two categories: using a service that collects the money and passes it back to you, or setting up y..."
- 16:00, 26 February 2014 diff hist +951 N Recruiting Created page with "In this section, we'll talk about the recruitment of various resources. == Topics == *Publicity and General Media *Media Tips *Recruiting Celebrities *Health ca..." current
- 15:59, 26 February 2014 diff hist +6,818 N People and Roles Created page with "An organization is made up of people, and those people take different roles. For those of you who have been running an organization for a while, especially if you've been doi..."
- 15:58, 26 February 2014 diff hist +830 N Novel Meeting Formats Created page with "Many advocacy organizations offer annual conferences and events for the individuals in their communities, which may include individuals with a genetic condition, their family ..."
- 15:57, 26 February 2014 diff hist +2,131 N Member Dues Created page with "Some organizations charge a substantial fee for membership and others charge nothing. Those that do charge use fees to offset the cost of services, and some believe there is ..." current
- 15:53, 26 February 2014 diff hist +4,747 N Consumer Medical Information Created page with ";[http://advocacyforpatients.org/ Advocacy for Patients with Chronic Illness, Inc.] :Free legal information, advice and advocacy services for patients with chronic illnesses i..."
- 15:52, 26 February 2014 diff hist +8,722 N Maintaining Your Membership Created page with "Organizations often report difficulty in maintaining membership, and this can be a source of disappointment or loss of momentum for an organization. You should not assume tha..." current
- 15:49, 26 February 2014 diff hist +1,520 N Maintaining Computer Files Created page with "==Backing-Up Files== Here are some reliable low cost solutions to back up your computer files off-site: *[http://www.carbonite.com/ Carbonite] – This "installs a small sof..." current
- 15:49, 26 February 2014 diff hist +3,157 N Emergency Preparedness Created page with "== Emergency Preparedness == Although September is emergency preparedness month, it is never too early or late to make sure you are prepared. Emergency readiness and disaster..." current
- 15:48, 26 February 2014 diff hist +3,618 N Choosing an 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
- 15:48, 26 February 2014 diff hist +14,477 N Fundraising Created page with "==Project Types== Raising awareness: *Jewelry *Books *Template for Road Race fundraiser Donations: *online management *search engine donations *"Casual..."
- 15:48, 26 February 2014 diff hist +3,508 N How to Obtain Donated Office Space Created page with "== Deductibility == '''Partial Interest in Property''' Generally, you cannot deduct a charitable contribution of less than your entire interest in property. '''Right to u..." current
- 15:47, 26 February 2014 diff hist +6,150 N Helping Your Membership Help Your Group Created page with "One of the greatest resources an organization has is its membership. This membership can be defined in a number of ways, and it is probably a good idea to examine membership ..."
- 15:46, 26 February 2014 diff hist +4,529 N Harnessing the Resources That Are Hard to Measure Created page with "Some of your greatest resources are intangible, and they range from special skills or insights in your members to recognizing an opportunity when it arises and making the most..." current
- 15:45, 26 February 2014 diff hist +4,875 N Fundraising Appeals Created page with "==About Appeals== Approaching and asking others for money may become vital or necessary, especially for developing or small organizations. The process is a slow buildup of sma..."
- 15:44, 26 February 2014 diff hist +4,830 N General Resources Created page with ";[http://www.TheArc.org/ The ARC of the US] :Provides services and advocates for children and adults with intellectual and developmental disabilities. :1010 Wayne Avenue, Suit..."
- 15:42, 26 February 2014 diff hist +2,058 N Information about Rare Genetic Diseases Created page with ";[http://www.geneticalliance.org/ Genetic Alliance] :The Disease InfoSearch section is especially resourceful. :4301 Connecticut Avenue, NW :Suite 404 :Washington, DC 20008 ..." current
- 15:37, 26 February 2014 diff hist +11,093 N Getting Grants Created page with "Grants are available from many sources, although most granting agencies, from the government to small family foundations, have some guidelines they follow. You will need to d..."
- 15:36, 26 February 2014 diff hist +1,143 N Matching Resources Created page with ";[http://www.birthdefects.org/ Birth Defect Research for Children, Inc.] :930 Woodcock Road, Suite 225 :Orlando, FL 32803 :Phone: 407-895-0802 :Email: staff@birthdefects.org ..." current
- 15:36, 26 February 2014 diff hist +2,521 N Meet Your Neighbors & Organizations Created page with "==Meet Your Neighbors== Meet Your Neighbors started as a Genetic Alliance webinar series to highlight organizations and their projects and resources. It has evolved into an el..." current
- 15:35, 26 February 2014 diff hist +1,647 N Financial Assets Created page with "Financial assets are a crucial component of any organization's success. When beginning to think about finances, it is important to first consider all financial resources by re..." current
- 15:35, 26 February 2014 diff hist +2,659 N Events Created page with "Events can run the gamut from being very labor intensive to being simple. They can also net a great deal or very little, after expenses. You might have multiple reasons for ..." current
- 15:34, 26 February 2014 diff hist +16,893 N Donations Created page with "Look at donations broadly. You can obtain money, equipment and supplies in this category. A donations campaign—or even an ad-hoc effort—can be combined with seeking foun..."
- 15:32, 26 February 2014 diff hist +2,848 N Publications Created page with ";[http://www.pbrookes.com/ Brookes Publishing Co.] :Collection of books that are resources on disabilities, education, and child development. :PO Box 10624 :Baltimore, MD 212..."
- 15:32, 26 February 2014 diff hist +3,053 N Resources for Nonprofits Created page with ";[http://www.alderconsulting.com/resources.html/ Alder Consulting] :"Technology on a Shoestring" series of resource articles for nonprofits. :488 14th Street :Brooklyn, NY 11..."
- 15:31, 26 February 2014 diff hist +2,788 N Conference Call Services Created page with "Often times organizations have individuals all across the country that need to stay in contact. While many times email can be used, sometimes you need to talk with one another..."
- 15:29, 26 February 2014 diff hist +1,893 N Sibling Support Created page with ";[http://www.nichcy.org/familiesandcommunity/pages/siblingissues.aspx/ National Dissemination Center for Children with Disabilities] :Resources and stories to help siblings of..."
- 15:29, 26 February 2014 diff hist +10 Charity Rating Listings current
- 15:29, 26 February 2014 diff hist +3,431 N State Registration Created page with "== Charitable State Registration == [http://www.nasconet.org/agencies National Association of State Charity Officials] The majority of states require registration of organiz..."
- 15:28, 26 February 2014 diff hist +3,140 N Travel Created page with ";[http://www.aa.com/i18n/AAdvantage/partners/charities/milesToKids.jsp/ AAdvantage: Miles for Kids in Need] :This program from American Airlines provides air transportation fo..." current
- 15:27, 26 February 2014 diff hist +2,879 N Individual Speaker Recommendations Created page with "As organizations and institutions begin planning for workshops and conferences, good speakers are always a necessary requirement! Please add in your suggestions for speakers b..." current
- 15:26, 26 February 2014 diff hist +1,916 N Charity Rating Listings Created page with "As a nonprofit organization, there are many different opportunities to have your organization rated by such groupss as The BBB Wise Giving Alliance, Charity Navigator, Standar..."
- 15:25, 26 February 2014 diff hist +15,117 N Building a Website Created page with "Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are r..."
- 15:24, 26 February 2014 diff hist +2,830 N Becoming the Organization You Imagine Created page with "For a small organization, development can be a very daunting topic, probably because of all the baggage that money carries with it, sometimes, as individuals founding a new ..." current
- 15:22, 26 February 2014 diff hist +2,877 N Working with a Lawyer Created page with "Your organization should establish some kind of relationship with a lawyer from early on. A lawyer can help you review documents, ensure that you have the appropriate documen..."
- 15:21, 26 February 2014 diff hist +6,051 N Working Remotely Created page with "Many advocacy organizations start as a like-minded group of individuals who are willing to volunteer large amounts of time and effort to improve the situation of those affecte..."
- 15:11, 26 February 2014 diff hist +2,156 N Volunteers Created page with "You will draw your volunteers from your members and from the community at large. Your volunteer pool may include affected individuals and their families as well as people who..."
- 15:09, 26 February 2014 diff hist +614 N Tax and Finance Created page with "In this section, we'll talk about Tax and Finance for advocacy organizations. *Setting up Useful Systems *Financial and Summary Statement *State-Specific Issues *..."
- 15:09, 26 February 2014 diff hist 0 Staff →Job Postings
- 15:09, 26 February 2014 diff hist +3,645 N Staff Created page with "In the beginning, staff is often voluntary. But as the organization grows, the day to day needs grow as well. ==Bringing on Senior Management== *Media:A_New_Seat_at_the..."
- 15:07, 26 February 2014 diff hist +15,819 N Your Organization's Name Is Important Created page with "It may seem that this should not even warrant discussion. You can call your organization whatever you like, right? Yes and no. A name has strategic implications. Just as w..."
- 15:07, 26 February 2014 diff hist +994 N NAC Best Practices Created page with "NAC purpose: to provide advice and recommendations to project steering committees. *Invite NAC members. **If before grant submission, get Letter of Support from potential NAC..." current
- 15:06, 26 February 2014 diff hist +3,739 N International Offices Created page with "Due to the nature of several genetic disorders, even small to medium sized organizations may find it necessary to operate on the international level. Legal and logistical proc..."
- 15:03, 26 February 2014 diff hist +2,212 N Insurance and Policies Created page with "When starting an organization, there are many policies to craft and organizational decisions to be made such as what types of insurance to carry. On this page, you will find a..."
- 15:01, 26 February 2014 diff hist -74 Finding a Lawyer
- 14:59, 26 February 2014 diff hist +3,330 N Finding a Lawyer Created page with "Finding a pro-bono lawyer is not too difficult. It is often best to begin by asking for such assistance in your networks: church, temple, schools, neighborhood, etc. If you h..."
- 14:58, 26 February 2014 diff hist +4,348 N Ensuring Cultural Competence Created page with "As our population becomes more diverse, it is vital that individuals, organizations, communities, and healthcare providers understand the needs and ways of other cultures. =..."
- 14:58, 26 February 2014 diff hist +2,751 N Developing a Governance Board Created page with "==How Will You Motivate Them?== There are many reasons why individuals might choose to make a difference by supporting your organization and helping to guide it. Some of the..."
- 14:57, 26 February 2014 diff hist +4,942 N Bylaws and Articles Created page with "==Bylaws== Bylaws set out your mission and purpose and describe clear process for making policy decisions. They also prevent harm to your group, by providing a legal framewor..."
- 14:57, 26 February 2014 diff hist +7,420 N Advisory Boards Created page with "Each advocacy organization should have professionals providing some guidance to the organization on various matters. Genetic Alliance offers these guidelines for professiona..."
- 14:57, 26 February 2014 diff hist +3,483 N Developing the Organization That Can Achieve Your Goals Created page with "== Introduction == Every organization has its own culture and resulting style. Effective organizations can have different structures and perform many distinct functions. So..." current
- 14:56, 26 February 2014 diff hist +4,582 N Considering Starting a Support Group for a Condition that Already Has One? Created page with "When I am contacted by somebody who is interested in starting a disease association, I try to give them some ideas to ponder before they get started. In particular, I suggest ..." current
- 14:56, 26 February 2014 diff hist +2,011 N Compare Goals and Resources, with the Characteristics of the Condition Created page with "In this section we will examine the match between your goals and your resources. Often organizations capitalize on their readily available resources, and sometimes do not pur..." current
- 14:56, 26 February 2014 diff hist +1,426 N Characterize Resources Created page with "Organizations have many resources available to them, often within their own membership. In considering the following categories, consider nontraditional methods for obtaining..." current
- 14:55, 26 February 2014 diff hist +4,930 N Characterize Condition Created page with "Don't neglect the impact of the characteristics of the condition. Advocacy organizations often try to emulate what has been successful for another organization, especially in..." current
- 14:55, 26 February 2014 diff hist +5,465 N Determine Goals Created page with "What do you want to do, learn, and share? This can be as profound as saving your child from chronic illness, disability or death or as crucial as revitalizing your organizati..." current
- 14:54, 26 February 2014 diff hist +2,109 N Genetic Alliance Created page with "==About Us== Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of..." current
- 14:54, 26 February 2014 diff hist +6,564 N The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates Created page with "When our son was diagnosed with Klinefelter syndrome in 1988 we went to see a genetic counselor. Perhaps she was naive in assessing our family resources and ability to un..." current
- 14:51, 26 February 2014 diff hist +6,988 N History of Advocacy Organizations and Genetic Alliance Created page with "== Brief History of Self-Help Organizations == Voluntary genetic associations are rooted in the history of self-help organizations, going back to the mid-1800s. Structured se..." current
- 14:50, 26 February 2014 diff hist -1 Main Page
- 14:49, 26 February 2014 diff hist 0 Main Page
- 14:48, 26 February 2014 diff hist +2,509 N How to post a file on WikiAdvocacy Created page with "==Deciding Where to Post== Files and images can add a wealth of content to the wiki, but like any information, it's important to consider where it should be placed within the..." current
- 14:47, 26 February 2014 diff hist +2,139 N How to: Create a New Wiki Page Created page with "FIRST, make sure you are logged in to the wiki site!!! You will not be able to create a new page otherwise. If you do not already have a wiki account, creating one is free a..." current
- 14:46, 26 February 2014 diff hist +735 N Help:Contents Created page with "*Start Using WikiAdvocacy *Overview of WikiAdvocacy *Creating New Pages *Basic Formatting *Cool Tips *Editing Practice ==See Also (External Links)== ..." current
- 14:42, 26 February 2014 diff hist -631 WikiAdvocacy:Community Portal current
- 14:42, 26 February 2014 diff hist +1,045 N WikiAdvocacy:Community Portal Created page with "'''Community Portal''' is a place where you can post questions, suggestions, to do lists, and anything else you think is needed to enhance WikiAdvcacy. Everyone is encouraged..."
- 14:41, 26 February 2014 diff hist +1,571 N How to Get Started Created page with "==Editing WikiAdvocacy is Easy!== Editing WikiAdvocacy is very easy! Simply click the edit tab at the top of the page, type something in, and hit the “Save page” button a..." current
- 14:41, 26 February 2014 diff hist +2,926 N WikiAdvocacy:About Created page with " '''WikiAdvocacy''' is a communal resource for aiding advocacy. WikiAdvocacy was initially created by Genetic Alliance, and grows in value through the contributions of c..." current
- 14:40, 26 February 2014 diff hist +1,981 N How to Use This Guide Created page with " This guide is a resource for a range of organizations, from the very small kitchen-table group (or maybe just a thought in the mind of a parent) to an established organizatio..." current
- 14:39, 26 February 2014 diff hist +6,524 N Why Go There? Created page with "Do you really want to found, maintain, or work for an advocacy organization? If you are using this guide, then your answer to this question is obviously yes. But we pose the..."
- 20:26, 25 February 2014 diff hist +3,169 N The Power of Advocacy Organizations Created page with "Genetic advocacy organizations enlist the voices and engage the hearts of individuals and families who yearn for solutions, relief, services, treatments, and comfort. They ar..." current
- 20:25, 25 February 2014 diff hist +3,033 N Defining Our Terms Created page with "The field of advocacy has changed over the years. There are some practical applications of these changes, and the changes themselves have been challenging in some cases. Jus..."
- 20:24, 25 February 2014 diff hist +8,287 Main Page