There are several listserves available for sharing bladder exstrophy information.

1) GENERAL: 

ABC Email listserve

Subscribe:   Please read our Policy/Disclaimer before subscribing.  Please observe listserve etiquette and recommendations as listed below. Click here to subscribe - Please note that you will be asked to sign up to Topica (our BB/email listserve provider) to join this list. 

Read Bulletin Board: View posts on bulletin board at: (http://www.topica.com/lists/bladderexstrophy/read)

The ABC email listserve/bulletin board is available to all those interested in sharing information regarding bladder exstrophy, espispadias, and cloacal exstrophy (not just ABC members).   You have the option of receiving each individual message via email (recommended!), message digests (many messages sent in one email), or using the bulletin board only (no email).   Once you have subscribed, post email to : bladderexstrophy@topica.com . 

Exstrophy-L Listserve

This listserve is operated by the Hospital for Sick Children and is maintained by Barbara Neilson (an ABC member), a social worker that works with exstrophy families.  To subscribe, send an email to majordomo@sickkids.on.ca , leave the subject area blank, and in the body type the following two words: subscribe exstrophy . After receiving confirmation that you are a member of the listserve support group, post all messages to the support group by emailing exstrophy@sickkids.on.ca

2) FOR ADULTS WITH EXSTROPHY:

This listserve is operated by the Hospital for Sick Children and is maintained by Barbara Neilson, a social worker that works with exstrophy families.  Only adults with exstrophy can join this listserve.  Please email bneilson@sickkids.on.ca to inquire about signing up.

3) FOR CHILDREN WITH EXSTROPHY:

Girls Only Listserve

This listserve is operated by the Hospital for Sick Children and is maintained and monitored by Barbara Neilson, a social worker that works with exstrophy families.  Only girls (up to 20 years old) with exstrophy can join this listserve.  Please email bneilson@sickkids.on.ca to inquire about signing up.

Boys Only Listserve

This listserve is operated by the Hospital for Sick Children and is maintained and monitored by Barbara Neilson, a social worker that works with exstrophy families.  Only boys (up to 20 years old) with exstrophy can join this listserve.  Please email bneilson@sickkids.on.ca to inquire about signing up.
 

ABC General Exstrophy Listserve Rules/Netiquette:

These rules will be sent to all new users when signing up and will be sent out to the listserve once per month.

  • Keep your questions and comments relevant to the focus of the discussion group - the discussion of Classic Bladder Exstrophy, Isolated Epispadias, Cloacal exstrophy and its related anomalies.

  • Use the subject line to identify your post's specific exstrophy related topic, i.e., not just "Question", but "Question about catheter care".   It's really helpful for finding answers to your own posts, or researching older posts for specific information.  If you are replying to a previous post and are changing the topic in your reply, please change the subject field to reflect the new subject.  

  • Please check the FAQ (Frequently Asked Questions) section and the Glossary of Terms on the ABC web-site used in describing the exstrophy/epispadias complex.  This will help new subscribers understand any terms that veteran users are using without the need of asking these questions on the listserve.

  • If another person posts a comment or question that is off subject, please refrain from replying to the list.  Please respond to this person on their own email address. 

  • When quoting another person, edit out whatever isn't directly applicable to your reply.  Don't let your mailing software automatically quote the entire body of messages you are replying to when it's not necessary. Take the time to edit any quotations down to the minimum necessary to provide context for your reply.

  • Please understand that our members are from many different countries, religions and cultures.

  • Treat others on the list as you would want them to treat you.

  • Please refrain from the use of verbally abusive language.

  • When replying to a message posted to a discussion group, check the address to be certain it's going to the intended location (person or group). It can be very embarrassing if they reply incorrectly and post a personal message to the entire discussion group that was intended for an individual.

  • Save your subscription information to Topica (username and password) for future reference.  If you are going away for a period of time you can temporarily modify your options to read only from the bulletin board.  This will prevent you from getting 100's of emails in your inbox to read when you return!  You can always modify your options once you return.

  • Consider setting your options in Topica for the digest version of the posts to the listserve.  One email per day including all posts to the bulletin board will be sent to you.   After logging into Topica (www.topica.com), choose My Topica and modify the options to receive your posts.

  • If you have any comments, questions or suggestions regarding the above information please do not hesitate to email us at webmaster@bladderexstrophy.com . 

If there are any groups on the general listserve that would like to explore the option of creating another listserve with another focus, please put forward your requests!  We would be happy to investigate this possiblity!



Association for the Bladder Exstrophy Community

Archived ABC Bulletin Board for previous members of the 'old' ABC bulletin.  Please enter your User Name and Password in the box provided below.  This bulletin board is now read-only.

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