To subscribe or unsubscribe from any PXE International listserv, please email Mary Peckiconis, or call her at 202.362.9599, extension 208.
PXE Announcements listserv
PXE Announcements is a one-way, post-only email list. PXE International staff post announcements of upcoming events, important activities and research breakthroughs. No responses are allowed on this list. As a registered member of PXE International, you are automatically subscribed to our PXE Announcements listserv when you provide an email address.
PXE Medical listserv
PXE Medical is an optional, moderated email list for serious discussion of PXE issues. This list is akin to attending a medical meeting with microphones placed around the room. Feel free to 'step up to the microphone' and post your medical question or comment. No stories or personal experiences are accepted.
To ensure we have the highest quality information possible, PXE International moderates this list. Posted questions go into a queue where staff reviews and then releases the question to the list. PXE International staff, Professional Advisory Board members, PXE clinicians and researchers answer these questions based on evidence defined by the medical community. All posts are considered confidential and no posts may be forwarded.
PXE Chat listserv
PXE Chat is an optional list open to anyone registered with PXE International and interested in PXE, including individuals with PXE, their families, friends or doctors. Discussions on PXE Chat are like everyone on the list sitting next to each other in one large room. Opinions may vary on some issues, but mutual respect should be universal.
Answering questions on any aspects of PXE is the primary reason this group exists. Medical questions are welcome on our companion list, PXE Medical. A list of Frequently Asked Questions for PXE can be found on the FAQ page as well as in the PXE General Bulletin. Please check the website for the answer to your question before posting to the group. Topics related to PXE, including questions about the care or characteristics of PXE, personal updates, thanks, and social news are all acceptable. 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.
Virus alerts, chain letters, personal advertising, poems, and other emails of this type are not acceptable. For questions about the operation of PXE Chat or how to unsubscribe from the list, please email Mary Peckiconis, or call her at 202.362.9599, extension 208.
Disclaimer: PXE International assumes no responsibility for the content or use of the PXE Chat discussion group, or the accuracy of the information provided. Please double check any information you receive. What you hear in this group is not a substitute for medical or legal advice. If you have a medical question, see a doctor. If you have a legal question, consult a lawyer.
To read or search any email list to which you are subscribed:
- Go to http://www.galists.org/read/login/?forum.
- Fill in your email address. Click ok.
- Fill in your password, the one you set when you registered online. Click ok.
- A list of all email lists to which you are subscribed will appear. Click on a list. Messages posted to that list will appear in date order beginning with the most recent.
- Click on the individual message to read it.
- Use the Search button in the left sidebar to search by key word(s).
Use the My Account button to change how you receive the lists, whether one at a time or in digest form.
PXE Chat list netiquette
No outside groups or organizations are allowed to post to the PXE Chat email list. In addition, PXE International cannot use its listservs to advertise physicians. If individuals wish to send the name of a physician to PXE International for our database, they can do so. We regularly answer inquiries for the names of physicians in particular areas.
Do not type in all capital letters. This is considered shouting and is rude.
Anonymity of members
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.
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.
If you can't back up your comments with facts, don't speculate. Misinformation spreads quickly. 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 chat list. Vague or unsubstantiated posts are discouraged. Better to admit ignorance than to fake genius.
Flaming - cruel personal 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.
Identify yourself properly
Any email sent to the group should be signed. You may also include the city, state and/or country where you live. There are multiple subscribers with the same first name, so it is helpful in distinguishing who is speaking.
Lurking describes 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 PXE Chat list to speak up or make themselves known.
Restate key information
If you are 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.
Reply = Reply all
Hitting the Reply button is equivalent to Reply All on email lists. If you want to send a message only to the person posting, use the Forward button to forward your reply email to just that person. Avoid messages that simply say "Me too" or “Thank you” but add nothing to the discussion. Showing support is important, but if you feel the need to reply, it is better and probably more supportive to say more than just two words.
Special fonts, or other special effects such as animation or sound, 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. Turn off HTML in your email program. Postings should be in plain text only. Try to limit signature information posted at the end of the message to four lines.
Spelling, punctuation and grammar
Double check your spelling and grammar before posting messages. Without body language and inflections, sometimes postings can take on an unintended tone. 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.
Useful subject lines
Before responding to a post, check the subject line for accuracy. If the subject of the email has changed, change the subject line before replying. Meaningful subject lines help the rest of the group follow the threads easily.