Online Community: Discussion Boards, Email Groups, Chat Rooms
PHA Online Community tools, such as the discussion boards, email groups and chat rooms, were created to give patients and their loved ones a way to receive and give support and share information with others. PHA, as an organization, rarely takes part in the dialogue as we want the communication to flow openly among members of the PH community. Our hope is that everyone feels welcome and supported.
Please remember that all online community participants have something significant in common with you: their life has been changed by pulmonary hypertension. Beyond that, you may have different views of the world, but what brings you to the board is what you have in common. We encourage everyone to help ensure that conversations are productive and supportive.
While using these boards please keep the following guidelines in mind:
- These online community forums are intended to provide a meeting place for patients and family members to communicate with one another. They are not intended to provide medical advice on personal health matters, which should be obtained directly from a physician. PHA will not be responsible for visitors' actions taken as a result of their interpretation of information contained in these forums.
- These forums are for PH patients and their family and friends, but they can be viewed by anyone. As such, please use care when posting messages. Due to the public nature, feel free to register with an online pseudonym instead of your real name if you prefer.
- Electronic messages lack the nuances of face-to-face and telephone conversations. When composing a message, please try to be as clear about your intent as possible, as to minimize offending others. When reading a message, please remember that the written word may be open to interpretation.
- These forums are a place for community and support. Messages with profane language or that contain harmful comments about an individual or group are prohibited and subject to removal. See below for details about reporting a problem message.
- Keep in mind that the subject of these forums is pulmonary hypertension. We encourage participants to minimize off-topic messages, but if you do post an off-topic message, please be sure to mark the message as Off-Topic (OT) when composing your message.
We hope the forums meet the needs of the community by providing an easily accessible way to communicate, exchange support and share information any time of any day. One of PHA’s primary goals is to end the isolation that can occur with a diagnosis of PH. Our hope is that these forums provide a welcoming and hospitable environment where that can occur.
Reporting a Problem
If you would like to get in touch with PHA or report a problem, please contact us at Chats@PHAssociation.org. Be sure to copy the message from the chat, forward the email message or provide the direct URL (web link) to the discussion board post in question.
For the Discussion Boards, given the extensive feedback we’ve gotten from you about what you want the discussion boards to be, PHA will consider removing messages or message threads you bring to our attention that are on non-PH related topics or that involve the poor treatment of other discussion board participants. We do not read the boards on a regular basis and will only act on messages that board participants bring to our attention. Address your concerns to Boards@PHAssociation.org with the direct URL/link of the message in question.
Any Persons Acting on Behalf of a Third-Party Company or Organization and/or with Marketing Intent
Any person, including members of our PH community, acting on behalf of a third-party company or organization and/or with marketing intent should communicate with PHA at Boards@PHAssociation.org PRIOR to posting a message to determine the benefit and appropriateness of the message.
Directories are available for your informational use and are not to be used for commercial purposes, including developing mailing lists.
When using a document library -- whether it is to post documents to the site for the public, such as the Support Group Leader document library, or to share information with others in a group, such as in the International Leaders Corner -- it is your responsibility to ensure you have permission to share the information. When directed, you should keep the information shared on these pages confidential. PHA is not responsible for the divulgence of information by document library participants or others.
Extranets & Members Only
If you are given access to an Extranet site for certain PHA organizational groups (e.g. board, SLC, support group leaders, international association leaders, corporate committee) or to a members-only section, such as the PH Professional Network (formerly PH Resource Network) Member Access section, the information contained within should be held confidential and only shared with the other members given access to the section, unless the postings clearly identify intent to more broadly circulate.
Support Group Sites
Support group leaders are given access to the support group manager backend to manage your website and communicate with your members. You should keep the contact information of your members confidential and not share with anyone unless given express permission by the member. Email communication tools are to be used for official support group business only.