To read an overview of FOPonline, click here. To enroll in FOPonline, please click here. To enroll in FOPbrasil contact sosfop@uol.com.br. To enroll in FOPlatinoamerica contact frobert@mail.fsoc.uba.ar.

It is the policy of the IFOPA to facilitate the exchange of information, experiences and opinions among the members of the organization. We encourage communications between individuals and the group that are informative, respectful, and responsible, which means consistent with the IFOPA's position of neither prescribing nor endorsing particular methods of coping with the difficulties of FOP, and mindful of the unique and unpredictable behavior of FOP.

The FOPonline Bulletin Board discussion group is one way the IFOPA supports this policy. Since the comments and letters of the e-mail bulletin board come directly from individuals to the group without prior review by the organization, the IFOPA has no direct control over content. However, the IFOPA encourages acceptable content by creating the attached written FOPonline Guidelines setting forth the rules for utilizing FOPonline in a way that allows for the enjoyment of everyone. These FOPonline Guidelines and the IFOPA's FOPonline Policy & Procedures describe how FOPonline will be managed, including clear consequences for the violations of the rules.

Please read these Guidelines very carefully, and if you have any questions (including how to unsubscribe, how to change your e-mail subscription address, etc.), or if you have any suggestions for improving this service, please contact the IFOPA office at together@ifopa.org for FOPonline, sosfop@uol.com.br for FOPbrasil and frobert@mail.fsoc.uba.ar for FOPlatinoamerica. Please note that the IFOPA does not monitor the FOPbrasil or FOPlatinamerica online discussion groups.

Thank you for your interest in sharing information with our group! For more information on the FOPonline newsgroup , please click this link.

1. Scope of Discussion

The main reason we all joined the FOPonline group is because we share a common interest in FOP. Questions/concerns/comments about FOP, health, independent, social & psychological issues, gadgets, adaptations, resources, research, FOP member birthday greetings, fundraising, event and media information, news/comments from international organizations, introductions and welcoming new FOP families to the community are all acceptable FOP-related postings.

Holiday wishes, jokes, poems, chain letters and invitations to non-FOP related email or internet-based networking groups (such as Facebook, MySpace, etc) are non-FOP related postings and are not allowed.

Providing a forum for the polite exchange of questions and answers on all aspects of FOP is the primary reason this email group exists. FOP personal stories/updates are also encouraged because they contribute to the development of warm connections between the people using the group. However, if a conversation has become just between two people, with no general benefit to the group, the discussion needs to be taken off the group line and continue just between the individuals.

From time to time, the IFOPA will also use FOPonline to make announcements. Aside from these communications from the organization, the IFOPA assumes no responsibility for the content or use of this discussion group, or the accuracy of the information provided here. Please check out any information you receive, keeping in mind that what you hear in this group is not a substitute for medical or legal advice. Therefore, regardless of what you may be told on FOPonline, if you have a medical question, you should ALWAYS see a doctor, and if you have a legal question, you should consult a lawyer. Of course, when you consult these specialists, you can take the collected wisdom and experiences of the FOP community with you as a starting point for your discussions.

2. Religious Topics

The IFOPA is a non-sectarian organization whose members belong to many different faiths. Out of respect for the varied faith traditions and spirituality of its members, and because of the non-religious nature of its mission, the IFOPA's Board of Directors adopted a Religion Policy and Procedure that requests that submissions of a religious nature or appearance be kept to a minimum in IFOPA publications and communications (printed and online). In recognition of the fact that spiritual and religious faith can be an important support for many people, the IFOPA facilitated the creation of a separate online communication method for this purpose that is currently called “PrayforFOPhealing.” Please contact FOP member Theresa Caruso at hamsancity@aol.com to be added to the group.

3. Lurking

"Lurking" is a term used to describe people who join an electronic discussion group, and then never post a message. Despite the somewhat negative connotation, "lurking" is actually very acceptable and even encouraged on such groups. No pressure should ever be put on members of the discussion group to "speak up" or "make themselves known." A person is still learning when he or she lurks, and he/she is the only one who can tell when he/she is ready to share not only his/her thoughts, but also the sender's email address, which is revealed to the group when a message is sent to FOPonline.

4. Useful Subject Lines

Before responding to a post, please check the subject line for accuracy. If you are replying to a message, and your topic has changed significantly from the original subject, PLEASE CHANGE THE SUBJECT so that it matches your topic. A meaningful subject line makes the archivist's job easier and helps the rest of the group follow the postings on a particular subject more easily.

5. Identify Yourself Properly

Any e-mail sent to the group should be signed in a way that includes, as a minimum, the name of the person typing the message, his/her relationship to a person with FOP, the age of the person with FOP now, and the age at diagnosis. If you are asking questions or seeking advice, it might also be helpful to include other relevant background information, such as your geographical area.

6. Where to Send Messages

Please address messages to FOPonline@yahoogroups.com for FOPonline, fopbrasil@yahoogrupos.com.br for FOPbrasil and foplatinoamerica@yahoogrupos.com.br for FOPlatinoamerica. When you do, please send it to the group only . If you wish to send it to other people in your address book also, please do so separately. That way, their names & email addresses are not revealed to the entire group.

7. Replying to Messages

Please avoid messages that simply say, "me too," but add nothing else to the discussion. They clog up people's mailboxes. Showing support is important, but if you feel the need to reply, it would be better (and more supportive) to say more than just two words.

8. Individual Emails

This discussion group is for general interest items only; one to one communications should be sent via direct individual emails. Please check that what you are posting will benefit the majority of the group. If your posting is directed at or replying to an individual (or two), it is better for you to send it directly to them. Personal thanks, "Me too's", and one-liners should also be sent directly to the individual person you are addressing.

9. Respect

Providing a forum for the polite exchange of questions and answers on all aspects of FOP is the primary reason that FOPonline exists. As such, respect for each other should be a universal given, even when opinions vary on some issue. You should never personally attack someone or say anything that is not supportive, informative or helpful to the group. Please avoid capital letters.

Another sign of respect to the group is to choose your subjects and words carefully. Please remember that persons of all ages read the postings. You should not use language or discuss subjects that you would not be comfortable saying in front of an audience composed of people ranging in age from children to adults. This does not mean that serious or personal subjects cannot be discussed; just that it has to be done in a way that shows concern for everyone. The best way to handle this is to use the “Subject” line as a way to warn people if your subject is personal, painful, or adult oriented. Depending on the subject, you might choose to address the subject directly with a smaller group of people outside of FOPOnline. You could post the topic and ask those that are interested in discussing it further to respond. You can then communicate more openly with that specific interest group.

It is impossible to please everyone all the time. That is why respect also means occasionally having to tolerate a subject that makes you uncomfortable. As long as the issue raised is FOP related and isn't obscene, crude, or insulting, please show your respect for the FOP community by simply deleting a message whose subject you personally find distasteful. It may be important to someone else. Please don't criticize either the subject or the sender.

10. Attachments and Personalizing Your Emails

E-mail attachments should not be sent through the discussion group. They might accidentally contain a virus and/or clog up the recipient's inbox, especially if the file is large. If you have a document that you think the group would find helpful, please describe it in your email and ask members to email you privately if they would like you to send them a copy of it privately.

Since the IFOPA supports individual expression, personalizing your email with special formatting (italics, colored text, etc.) or distinctive backgrounds is allowed. You run the risk, however, that it will come through as an unacceptable attachment, blank document, or unreadable letter for some group members. For this reason, reasonable and minimal decoration is recommended.

11. Vague Posts and Misinformation

Vague or unsubstantiated posts are discouraged. If you can't back up your comments with facts, it is best not to speculate. Check and double check your facts (for example, about different medications) because misinformation spreads quickly. While we all want to be as helpful as possible, no one will benefit from incorrect information being spread around the discussion group. If you mention something you have “heard”, please make sure you point out the vagueness of your information, reminding people to consult their own doctors, etc.

12. IFOPA Responsibilities – Guidelines & Moderators

The IFOPA will maintain and update written FOPonline Guidelines for the appropriate use of FOPonline, and have them available on both FOPonline and the IFOPA Web site. The Executive Director (at LindaIFOPA@bellsouth.net ) and the Editor (at FOPNews@bellsouth.net ) will be the moderators of FOPonline, and they will oversee the activities of the online group. They will also manage the consequences for violations of the rules as described #13 below.

13. Violations of these FOPOnline Guidelines

When a person fails to follow the FOPOnline Guidelines in a substantial manner, it is a violation that will generate a consequence as set forth in Number 14 below. There are several types of violations:

a. a content violation is a post with a subject that does not meet the criteria of “FOP related” postings (see Item 1 for details), is intentionally controversial and argumentative, religious or political in nature, etc;

b. a respect violation is a post with that fails to show consideration for all members of the list and tolerance for all points of view, interests and opinions. Examples: using inappropriate language, failing to or refusing to take an extreme subjects to a private discussion, criticizing the poster of a message whose content one disagrees with or finds discomforting,

c. a behavior violation is when an FOPOnline member tries to sell items to the list or engages in personal attacks and other types of “flaming;”

d. a privacy violation is when an FOPOnline members fails to maintain appropriate confidentiality regarding FOPOnline messages. Examples: forwarding FOPOnline messages without permission and/or with the email addresses, sharing or selling names & address, etc.

14. Consequences for Violations of these FOPOnline Guidelines

For the violations described here, the consequences are as follows:

a. First violation – The moderators will send the FOPonline Guidelines to the personal e-mail address of the person breaching the rules with a note detailing the infraction and the consequences for continuing said behavior.

b. Second violation – The moderators will call the person breaching the rules and explain the infraction, warning him or her that the penalty for a third violation of the rules is to be removed from the FOPonline group for six months.

c. Third violation - The moderators will call the person breaching the rules and explain that the penalty for a third violation of the rules is to terminate his or her membership on FOPonline for six months, though his IFOPA membership remains intact.

d. Reapplication – After six months, the person may reapply for membership in FOPonline.

e. Permanent termination – If someone who has been readmitted to FOPonline again violates the FOPonline Guidelines three times, his or her membership on FOPonline will be permanently terminated.

15. Privacy Notice

The IFOPA Protects the Anonymity of FOPonline Members

a. In general, the IFOPA is committed to protecting the privacy of its members, readership and other associated parties. We will not, without permission, disclose, share or sell any personal information provided to us by any means of communication (e.g. Web site, online group, publications, membership application) with any other party, organization or entity, except as required by law. For more information on the privacy policy, please contact the IFOPA office.

b. Regarding FOPonline, the IFOPA bulletin board discussion group is set up so that the email addresses of the group of members are not available to all the participants of the group. If you do not post messages, only the moderators will have access to your name and email address. When you post a message, however, other participants will see your name and email address.

c. FOPonline is a special service for IFOPA members that is intended to encourage better communication about FOP. Subscribing to the group for the purpose of compiling a mailing list or furthering commercial or personal interests is prohibited.

16. Bulletin Board Discussion Group Options and Changes

There are three ways to receive messages:

a. The default option (if you don't select something else) is that you receive e-mails as they are posted, which usually results in several separate emails a day;

b. You may elect to receive messages as a daily digest, which usually results in one big message each day that contains all posted messages; or

c. You may choose to read messages on the yahoo Web site by signing on to the FOPonline yahoo group with a free password; this results in no additional email sent directly to you.

NOTE: Unless you specify otherwise, when you join FOPonline, FOPbrasil or FOPlatinoamerica, you will receive messages as individual emails (choice “A” above). To choose another method of delivery, please contact the following:

• For FOPonline, contact the IFOPA Office at together@ifopa.org
• For FOPbrasil, contact the office at sosfop@uol.com.br
• For FOPlatinoAmerica, contact frobert@mail.fsoc.uba.ar

If you like receiving individual messages, but would like to be able to keep them separate from the rest of your email, you might want to investigate setting up a separate email address through one of the free e-mail services, such as hotmail.com or yahoo.com.

Remember: If your email address changes , please let us know via the addresses above.

Thank you for taking the time to read and understand these important Guidelines.