This is a Question and Anwser format for our closed group on Facebook. Just some simple guidelines to follow to help keep the conversations flowing.
The Burkitt’s Lymphoma Society Private Group has grown large and to help moderate it here is some basic information and rules to follow to help keep the conversations flowing. If a problem exists that you can’t resolve please take it up with an administrator and they can be found at this link. https://www.facebook.com/groups/BLSociety/admins/?order=defaultor
Alternately you can email firstname.lastname@example.org.
All your medical advice should come from your doctor, the information in our group is meant to be educational and not meant to be a substitute for medical advice from your Doctors or medical advice of any kind.
About our Facebook Group and some basic rules.
Burkitt’s is a rare form of cancer with unique characteristics and treatments. The experience of others can be useful, but everyone is unique so everything varies from person to person including treatments, severity, side effects and outcomes.
Our group is an informal support and advocacy group for Burkitt’s Patients and Caregivers both past and present as side effects can last a lifetime as well as the experience. We are here to support you as fellow cancer patients and caregivers by sharing our own personal experiences.
We ask that the group members respect others feeling and emotions, the experience with cancer can be devastating, life changing, or just a small glitch in your life, it varies from person to person, so each person’s situation is unique although the cancer might be called the same.
This form of cancer can affect anyone at any age or any race or any country, it simply does not matter. This group contains people of all ages and from all places, from the age 13 and up, so please keep that in mind when posting content. We hope you enjoy our group and find the information and support you seek from it.
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Questions and Answers.
Q. Can I post links?
A. Yes, but only if it is directly related to helping someone in a comment, or directly related to BL in some way. But links are subject to removal. We try to allow a reasonable view period of 48-72 hours for most links, but we encourage you to not post links as posts and this will help people on mobile devices sort through posts. If we allowed everyone to post links as posts our group would be focused more on links rather than sharing with patients and caregivers in their posts.
Q. Can I post pictures?
A. Yes, we welcome pictures of appropriate content.
Q. Can I post anything I want related to Burkitt’s lymphoma?
A. Yes, you can post any question or anything related to Burkitt’s lymphoma, but if its a link refer to our link policy.
Q. Can I advertise anything?
A. No, we do not allow advertising anything and advertising will be removed and spam type advertising will result in a ban. This also includes fundraising. Fundraising can be an important aspect for a Burkitt’s patient, but fundraising in the group is not conducive for the group. There are several reasons for this. 1. We are not equipped to verify fundraising. 2. We are an international group. 3. We do not want to over burden the group with advertising and fundraising pages.
People are allowed to advertise on our Public Facebook page in the posts by othrs section, but in the closed group it isn’t allowed.
Q. Can I use derogatory remarks against another member or call them names, use innuendos or demeaning comments?
A. No, and neither can anybody else, and those posts will be removed and a warning issued and repeat offenses could result in removal from our group.
Q. How do I handle a member I don’t like?
A. You could block them or ignore them, to learn how to block someone follow this link.
Q. Who can remove posts and comments?
A. Admins can remove posts and comments or the person who wrote them can. To learn how to delete or edit a comment follow this link. https://www.facebook.com/help/105443102880679
To learn how to remove a post or edit a post follow the link. You can edit or remove your own post in our group or contact an admin and ask that the post be removed.
Q. What can I say in a post or comment?
A. Anything you want, you are responsible for your own posts and comments, just follow the basic guidelines we have laid out.
Q. The Burkitt’s lymphoma Society group posts are taking up all the space in my news feeds. How can I adjust my notifications settings?
A. For our group take a look at this link, notification settings are under the notification tab at the top of the page. https://www.facebook.com/help/187225274663021#How-do-I-edit-my-notification-settings-for-a-group? You can also go to your account settings, then scroll to notifications, then scroll to group posts, select the group and adjust what you get on your feeds