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'''Question'''

The Barth Syndrome Foundation has utilized a Listserv since 2001.  We have used various platforms including the GA platform but since 2004 we have used a private vender.  That said, early on we realized the importance of establishing some guidelines for making posts.  We benchmarked other groups to establish guidelines.  Initially we distributed them on a regular basis. However this resulted in a significant decrease in the number of posts being made.  


'''Answer #1'''

I always post, immediately, reminding everyone that we can disagree.  But we cannot attack each other.  Then, I privately tell the offender that they can send me, privately, what they want to say and i will edit out the emotion, or they can chill.  I turn their frustration, anger, and rage to me.  I am very firm that they cannot contact their victim privately or I will have to do a removal. I also remind all persons that they can block any email address that offends them.  This slows the list serve for a couple of days, but I get lots of private messages.


'''Answer #2'''

We have but two rules for our 15+ year old MLD Family Discussion List™  ... privacy and respect.  Most behaviors and misbehaviors can be addressed under one of these two items.  


And the primary aspect of respect we concern ourselves with is to support each other regardless of any personal decisions we or others make about the care of our/their loved ones - and we acknowledge that can be a challenge because faith, culture, ethnicity and so many other things (including some we never call out like ignorance, shortsightedness, and selfishness) play into those decisions.  No matter what decision, choice, or perspective someone shares - we can always learn something from them and we can always love them ... or at least their loved one.  


Over 15 years we have learned a few things about managing/shepherding our online community, and fortunately, we have only had to remove one person, about 12 years ago, for violating rule #2, respect.


First off, we removed ourselves from being list moms and tried to instill in the community that this is their resource, not ours. Occasionally we have to guide and remind folks that we all come from different cultures, experiences, socio-econimic classes, experiences, and backgrounds. We also occasionally remind folks that the list is here to help share experiences, ideas, compassion and support ... and that all of this comes from those who write on the list. If something is not being discussed or a perspective is not being shared then don't complain, write about what you feel. In doing this we effectively instill in the subscribers that their mom is not here - they have to take on some personal responsibility for the health of the community.  And just like at a family reunion or a big Thanksgiving dinner - you can choose to sit next to someone or not ... and have a good time without regard to who is across the room.  Email filters and the delete button are your choice to ignore anyone you wish.


We do not allow dominance by one person or opinion on a topic or over the community by gently encouraging others to participate by asking leading questions ... not so much by shutting down conversations, being list mom, or king of all knowledge ... rather by engaging others.


While we have the ability to moderate the list or a specific poster, we try to not do that as it puts us in the role of censor when we would really much rather be a guide. These days, we moderate individuals only when spam comes through via their account.   


We do not archive messages ... we feel that the occasional repetitive nature of a live conversation is more current, accurate, engaging, and supportive.  Many object to this initially but do get used to the ebb and flow of topics.  And a plus for us ... we never need to censor/delete any posts.  


And with regard to FaceBook an other communities families set up.  We observe many of those and when a topic becomes less social and more disease specific we sometimes make a teaser answer but encourage the detailed discussion to occur over on the private MLD list where the advise will be disease specific.  We gently left folks know that most FaceBook groups and timelines are transient (not everyone sees the messages because they roll off the timeline) and the communities are often open to those with other related (and unrelated) diseases so the information may not be appropriate for your specific disease.  And sometimes a small group of one perspective vocal individuals drives these more public forums.  There are cases where mixed disease support is valuable - questions about local resources, general therapy/mobility/resource questions, etc.  It never helps to label a particular community gathering place bad ... just let them go their course and take the high road.


'''Answer #3'''

My name is Linda Hageman, RN reading your post I easily with what you are saying.  I am the Executive Director of American Multiple Endocrine Neoplasia Support; www.amensupport.org.  Last week was actually a very difficult week as I have been blasted by individuals that are not knowledgeable about Multiple Endocrine Neoplasia (MEN).  I too had to post rules on our FB Group and our website unfortunately we also noticed noticed quite a significant decrease of individuals using the FB Grp.  I was prepared for this as I had a talk with another colleague that recently had to make up rules for conduct.


I am attaching the set of rules that we adopted.  I was initially wondering if the patrons of our FB Group site would return and I have found that they have.  Having the rules gives you more of a platform when you have to delete or block someone.  Many are afraid to block anyone; however once I got a few of the negative people, which were breaking the rules constantly I noticed a much nicer, kinder group of individuals on the FB Group.  Believe me I did not want to block any individuals but once I did it was truly amazing how much more supportive and educational the postings became.

=='''Rules of Conduct'''==

We here at Hageman Foundation 501(c)(3), IRS approved nonprofit, doing business as American Multiple Endocrine Neoplasia Support rules of conduct on Facebook and our website  www.AMENsupport.org


If you have a medical emergency, please call 911.  Our moderators are happy to answer general questions regarding MEN.  However online forums should NEVER be used as a substitute for an Emergency Room Visit, Physicians consultation or office visit for medical care or medical advice.  Always talk to your physician before making changes to your treatment plan.
Giving Medical Advice is prohibited.  Please feel free to relate your personal experiences and any general information you would like to include to your post, BUT do not give medical advice.  
Please do not post links unless they come from a well-established, peer-reviewed medical journal (NIH, Endocrinology, and New England Journal of Medicine).  All links posted must provide guided by “evidence-based medicine”.  Inappropriate links will be removed, and repeat offenders may be subject to suspension/banning.


While Posters may discuss complementary approaches that are practiced in addition to conventional treatments such as Yoga, Stress Reduction, Balanced Diet, and Meditation.  Our forum prohibits discussions that promote “alternative” therapies designed to replace conventional medical treatment.


Debate the Topic Not The Person. Please be respectful and civil in stating your position, and do not use derogatory language or otherwise personally attack another poster, moderator, or Administrator.  This will result in immediate suspension or banning from the site.
Uses of Physicians Names, or Medical Centers are not to be used to post a negative comment.
Spamming or Product advertising is strictly prohibited.


If you use the Private Message option on FaceBook, please be aware if you are providing inappropriate medical advice, or abusing a fellow poster, the issue will be investigated.  Based on documented findings, abusers may be banned from the forum, suspended, or warned.
Web forum facilitators have the ability to either edit or delete posts that violate the above guidelines and suspend or ban individuals.


Questions or problems?  Not sure if link is OK to post?  Need to report a problem with another user please contact me at Linda@hagemanfoundation.org