<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.01 Transitional//EN"
   "http://www.w3.org/TR/html4/loose.dtd"> 
   
<html>

<head>
<title>Part II of the Genetic Alliance Interactive Guide</title>

<link rel="stylesheet" href="http://geneticalliance.theanteroom.com/InteractiveGuide/PartII/styles-site.css" type="text/css" />
<link rel="alternate" type="application/rss+xml" title="RSS" href="http://geneticalliance.theanteroom.com/InteractiveGuide/PartII/index.rdf" />

<meta http-equiv="Content-Type" content="text/html; charset=iso-8859-1">

<script language="javascript">
function OpenComments (c) {
    window.open(c,
               'comments',
               'width=480,height=480,scrollbars=yes,status=yes');
}
</script> </head>

<body>

<table cellpadding="0" cellspacing="0" border="0" width="750" align="center">

<!-- <tr><td valign="top" colspan="3" bgcolor="#FFFFFF">

<table width="748" cellpadding="0" cellspacing="0"><tr><td valign="top" align="left"><a href="/" title="Go to the Genetic Alliance Home Page"><img src="/InteractiveGuide/images/logofull.gif" border="0" alt="Genetic Alliance"></a></td>
<td valign="top" align="right"><div class="sidenav"><a href="/diseaseinfo/search.html">FIND SUPPORT GROUPS</a><br />
<a href="/contactus.html">CONTACT THE GENETIC ALLIANCE</a><br />
<a href="/members/listserv.html">SUBSCRIBE TO GENETIC ALLIANCE MAILING LISTS</a><br />
<a href="/donation.html">DONATE TO THE GENETIC ALLIANCE</a></div></td></tr></table>


</td></tr> -->

<tr><td valign="top" colspan="3" bgcolor="#000080" align="center">
<div class="book">AN INTERACTIVE GUIDE TO BUILDING ADVOCACY GROUPS</div>
</td></tr>

<tr><td valign="top" colspan="3" bgcolor="#666666" align="center">
<div class="part">Part II</div>
</td></tr>

<tr>
<td valign="top" width="150" bgcolor="CCCCFF">

<div class="sidenav">

<br />
<a href="/InteractiveGuide/PartI/">Part I</a><br />
<br />
<a href="/InteractiveGuide/PartII/">Part II</a><br />
<a href="/InteractiveGuide/PartII/Pages/cat_assessment.html">Assessment</a><br />
<a href="/InteractiveGuide/PartII/Pages/cat_structure.html">Structure</a><br />
<a href="/InteractiveGuide/PartII/Pages/cat_resources.html">Resources</a><br />
<a href="/InteractiveGuide/PartII/Pages/cat_support.html">Support</a><br />
<a href="/InteractiveGuide/PartII/Pages/cat_education.html">Education</a><br />
<a href="/InteractiveGuide/PartII/Pages/cat_research.html">Research</a><br />
<a href="/InteractiveGuide/PartII/Pages/cat_advocacy.html">Advocacy</a><br />
<br />
<a href="/InteractiveGuide/PartIII/">Part III</a>

<div> 

</td>
<td valign="top" width="450" bgcolor="#FFFFFF">

<div class="Section">

<h3>Internet Services: Mailing Lists</h3>

<p>
<p>Internet services are important for lay advocacy groups in the twenty-first century. They are relatively inexpensive services but critical ones for keeping the membership in touch with one another. One example of this is the Genetic Alliance MemberForum. It is a terrific gathering of experts - and experts-to-be - in many aspects of lay advocacy providing each other with the richness of experience that one can only experience in such an environment. </p>

<p>Mailing Lists</p>

<p>A mailing list is the simplest and perhaps most important way for your group to harness the power of electronic communications. E-mail lists permit your group to communicate instantly and cheaply with members all over the world, and allow your members to start and contribute to conversations on the many subjects that concern them. </p>

<p>Monitoring mailing list traffic gives you a sense of what is on the minds of members (although it is important to use other methods, since different people have different thresholds of comfort for different forms of communication). It also gives you a way to get time-value information to members immediately, without relying on surface mail or hoping members will visit a Web site. </p>

<p>Maintaining a mailing list requires diligence, however. Because the barrier to participation is so low, mailing lists can bring out the worst in some people - making them feel free to say whatever is on their minds, instantly, without the benefit of reflection. They can also be overtaken by conversation that is not on point - "noise" that drowns out the "signal." If you choose to maintain a mailing list, you must devise a "Terms of Service" - a list of rules and expectations that, if violated, provide for consequences, such as removal from the list.</p>

<p>Mailing lists can be as simple as a list of email addresses that a group leader uses to broadcast information, but interactive lists, where all members can participate, and which may have automated command functions, must be "hosted." There are many options for doing this, including creating a group at Yahoo! or Topica, or the ISP you use for your Website may offer mailing list support as a service as well. See the resources section for pointers to electronic hosts, and ask the Genetic Alliance about hosting a mailing list if you are not yet ready to purchase a hosting plan for a larger electronic presence.</p>

<div class="Sidebar">
<p>PXE General Discussion Guidelines</p>

<p>Purpose of the PXE General Discussion Group</p>

<p>Who can participate?</p>

<p>The PXE International list ( pxe@pxe.org ) is open to anyone who is interested in pseudoxanthoma elasticum.  This can be individuals with PXE, their families, friends, doctors, or anyone else who is interested.</p>

<p>Scope of Discussion</p>

<p>Topics related to PXE, including questions about the care or characteristics of PXE, personal updates, thanks, and social news are all acceptable. Answering questions on any aspects of PXE is the primary reason this group exists. Medical questions are welcome on our companion list, PXE Information.</p>

<p>Additional topics of discussion may include finding others in your local area with PXE to arrange personal meetings, or enlisting the help of the group to send support to a specific member who is in need.</p>

<p>PXE International also reserves the right to make periodic announcements or updates of events or programs we sponsor. These postings may include requests for ideas on improving the events, or to aid in determining interest in a specific idea.</p>

<p>Aside from these periodic announcements, PXE International assumes no responsibility for the content or use of this discussion group, or the accuracy of the information provided here. Please double check any information you receive, and keep in mind that what you hear in this group is not a substitute for medical or legal advice. If you have a medical question, you should see a doctor, and if you have a legal question you should consult a lawyer.</p>

<p>Off-Topic Discussions</p>

<p>Please do not post questions about the operation of the Discussion Group or send messages asking how to unsubscribe from the list. These types of questions are to be sent directly to the list administrator (pxe@pxe.org).</p>

<p>Any topic not related to PXE is not within the scope of this discussion group and should not be posted. This includes virus alerts, chain letters, etc.</p>

<p>Discussion Group Netiquette</p>

<p>Frequently Asked Questions</p>

<p>A list of Frequently Asked Questions for PXE can be found on the PXE International website at: PXE FAQ</p>

<p>Please check the website for the answer to your question before posting to the group.</p>

<p>Lurking</p>

<p>"Lurking" is a term used to describe people who join a mailing list, and then never post a message. Despite the somewhat negative connotation, 'lurking' is actually very acceptable and even encouraged on mailing lists. No pressure should ever be put on members of the Discussion Group to "speak up" or "make themselves known".</p>

<p>Useful Subject Lines</p>

<p>Before responding to a post, please check the subject line for accuracy. If you belong to the digest version of the list, you should change the subject line before replying to ANY message.</p>

<p>Meaningful subject lines help the rest of the group follow the threads easily.</p>

<p>Identify Yourself Properly</p>

<p>Any email sent to the group should be signed and should include as a minimum, the name of the person typing the message and their relationship to a person with PXE. It might also be helpful to indicate the age of the person with PXE, or the state you are in, or other relevant information, especially if you are asking questions.</p>

<p>Replying to Messages</p>

<p>If you're replying to a previous posting, include something to remind the rest of us what the original posting was. You don't need to include the entire original post (especially lengthy ones), but include enough so that your posting makes sense.</p>

<p>Avoid messages that simply say "me too" but add nothing to the discussion. Showing support is important, but if you feel the need to reply, it would be best (and probably more supportive) to say more than just two words. You might also consider a direct reply to the sender, rather than to the entire list.</p>

<p>Make Yourself Look Good</p>

<p>You should double check your spelling and grammar before posting messages. Without body language and inflections, sometimes postings can take on an unintended tone. Do not type in all capital letters - this is considered shouting and is rude. Keep in mind the only impression people will have of you is through your typed message, so make sure it reflects you properly. Do your best to use complete sentences and proper punctuation. The reader should not have to decipher your message.</p>

<p>Respect</p>

<p>You should never say anything on this Discussion Group you would not say if we were all sitting next to each other in one large room together. You should never say anything that is not supportive or helpful to the group. While opinions may vary on some issues, respect should be universal.</p>

<p>Time/Bandwidth</p>

<p>Because some of us have multiple medical issues or interests in various areas, many people are subscribed to a number of Discussion Groups. This can lead to trying to read dozens of postings everyday. You should be considerate of others' time when posting a message.</p>

<p>People access the Internet a number of different ways and read email with a number of different programs. Please keep this in mind. It can take a considerable amount of time for some people to receive even one message. Try to make that time worthwhile.</p>

<p>If your posting is directed at or replying to an individual (or two), it is likely better if you send it directly to them.</p>

<p>Also, special fonts or other effects, such as bold or italic type, should not be used. Many readers will not have the capability to view these types of messages and they will either appear blank or as an unreadable mess. Postings should be in plain text only. Any signature information posted at the end of the message should be limited to four lines.</p>

<p>Flaming</p>

<p>Flaming (cruel private attacks on any one person, or group of people, criticizing their opinions, views, character, or any other personal aspect) is prohibited. Personal disagreements should be handled privately, not through this list.</p>

<p>Attachments</p>

<p>Email attachments (such as files or photos) should not be sent through the list. If there is something you'd like to share, ask the readers to email you privately.</p>

<p>Advertising</p>

<p>No outside groups or organizations are allowed to post to this Discussion Group.</p>

<p>Be Accurate</p>

<p>If you can't back up your comments with facts, it is best not to speculate. Misinformation spreads quickly. Many newcomers to the group are hungry for information, and can be very impressionable to the comments of apparent "veterans". While we all want to be as helpful as possible, no one will benefit from incorrect information being spread around the Discussion Group. Vague or unsubstantiated posts are discouraged. It's better to admit ignorance than to fake genius.</p>

<p>Anonymity of List Members</p>

<p>PXE International members remain anonymous unless they choose to post a message. When posting a message, your return email will be revealed to the group. No list of  subscribers' names or other information is available to any one for any reason. Subscribing to the list for the purpose of compiling a mailing list or furthering commercial or personal interests is prohibited.</p>
</div>
</p>

<p>
<a href="http://geneticalliance.theanteroom.com/InteractiveGuide/PartII/Pages/000075.html">&raquo; Internet Services: Websites, Chat Rooms, and Newsgroups</a>
</p>



<p>&nbsp;</p>
<p>&nbsp;</p>
<p>&nbsp;</p>


</div>

<div class="powered">

<p class="nav"><a href="/privacypolicy.html">Privacy Policy</a> - 
<a href="/disclaimer.html">Disclaimer</a> - 
<a href="/partnerships/funding.html">Funding</a><br>

Maintained by the Genetic Alliance. <br>
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at <a href="/InteractiveGuide/About/">About the Interactive Guide to Building Advocacy Groups</a>. </p>

<p class="nav"><a href="mailto:caitlin@marmoset.com">Send feedback about the Interactive Guide</a>.</p>

<p class="nav"><b>SEPTEMBER 2004:</b> This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or <a href="mailto:caitlin@marmoset.com">send email</a>. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!</p>

</div>

</td>
<td valign="top" width="150" bgcolor="#FFFFFF">

<br />
<div class="rightbox">
<a href="http://geneticalliance.theanteroom.com/InteractiveGuide/PartII/Pages/000073.html">&laquo; Connecting Individuals</a> <br /><br />

<a href="http://geneticalliance.theanteroom.com/InteractiveGuide/PartII/Pages/000075.html">&raquo; Internet Services: Websites, Chat Rooms, and Newsgroups</a>

</div>

<!-- <div class="rightbox">
<a href="http://geneticalliance.theanteroom.com/mt-comments.cgi?entry_id=74" onclick="OpenComments(this.href); return false">Read or add comments (0 so far)</a>

</div> -->

</td>
</tr>

</table>

</body>

</html>