ABC Email Listserve/Bulletin Board

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, message digests (many messages sent in one email), or using the bulletin board only (no email).

• How to Subscribe
  • Please read our Policy/Disclaimer before subscribing.
  • Please observe listserve etiquette and recommendations as listed.
  • Click here to subscribe - Please note that you will be asked to sign up to Topica to join this list.
• To Read and View the Listserve, click here http://www.topica.com/lists/bladderexstrophy/read.
• To Post, email to bladderexstrophy@topica.com.

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!

ABC Bulletin Board Policy/Disclaimer
The "Association for the Bladder Exstrophy Community" (ABC) is a non-profit organization that supports the bladder exstrophy community. We are not affiliated with any medical institution or group and do not give endorsements as to the quality of any medical facility or services provided by physicians or nurses.

This list is operated and maintained by the "ABC" and we scrutinize applicants as to their intentions. Patients, families, doctors and nurses who deal with bladder exstrophy will only be admitted. The "ABC" will not admit users for 'educational study purposes'. The "ABC" will not provide any of the information posted on the list/bulletin board to any other source (this includes providing your username, email address or any information to research groups or studies, doctors, etc.).

This list is run on a service provided by Topica (http://www.topica.com) and there are certain requirements and Terms of Service that will apply to all new subscribers. All users  must provide a valid email address, first name, last name, age, zip code/postal code and country. Topica's terms of policies are outlined in full at the time of subscription. Specifically they state that they will not provide any of the personal information to a third party. However, aggregated user information that does not identify any user individually will be used to perform statistical analyses of the collective characteristics and behavior of Topica members and visitors, to measure overall demographics and interests regarding specific areas of the Topica domain and to analyze how and where to use their resources. They also use the aggregate data collected to inform their sponsors as to the number of people who have seen  and "clicked" on their advertisement. In addition, Topica may compile and disclose aggregate information about its users for promotional or other purposes. For example, they might want to disclose that a certain percentage of our users are located within a particular geographic area or fall within a particular age range. 

Disclaimer: The "Association for the Bladder Exstrophy Community" (ABC) has provided this list as a service to interested patients, families or medical professionals. The "Association for the Bladder Exstrophy Community" disclaims any representation or warranty, express or implied, concerning the accuracy, completeness or fitness for a particular purpose of the information contained on this list. Individuals accessing this information assume full responsibility for the use of the information and understand that the "Association for the Bladder Exstrophy Community" are not liable or responsible for any damage, claim or loss arising from the use of this information. Products or services mentioned in the list/bulletin board do not constitute recommendations or endorsement by the ABC. The views and opinions of those who post messages on the list/bulletin board do not necessarily reflect those of the ABC. Readers are recommended to confirm the information contained herein with other sources.

Rules: No spamming.....do not use the members email in any way to solicit 'junk' mail.