You’ve Registered for the PF Forums: Now What?

For those of you who have visited, registered and contributed to topics on the new Pulmonary Fibrosis News forums, thank you! As a member of this newly launched online community, you are helping to create a platform that unites patients, caregivers, friends, family members, advocates, researchers and medical professionals who have one common goal: eliminating pulmonary fibrosis.

If you aren’t aware of this new initiative, please take a look around the forums. Registration is free — just create a profile and you can read and contribute to a variety of different topics that might impact someone living with PF or someone caring for a loved one with the disease.

For the members who have joined, it would be wonderful to hear your thoughts. Below are some suggestions to help you navigate the forum and what to do once you have registered and created a profile.

Join a forum
There are some forums that are targeted to specific roles, such as private and separate forums for patients and caregivers/spouses. There are also forums that welcome anyone in the PF community, regardless of role, location or age. The forums will continue to evolve and be inclusive of anyone touched by PF as members are suggesting new ideas each day.

Contribute to a topic or start your own!
Within each forum are topics and discussions that involve both members and the moderator. These topics can be about anything that’s on your mind, from something you’re questioning to something you’re seeking advice about. They can also be posted to connect with others who might be in a similar stage of the illness as you are, such as preparing for lung transplantation or just diagnosed. There is no topic too large or small for the forums, and everyone’s contribution is valued and welcome.

MORE: How the Pulmonary Fibrosis News forums differ from other online communities

Join a group
The groups may seem strikingly similar to the forums, but they do in fact have significant differences. The main difference is groups are designed to bring people together who have shared interests, or who are interested in one particular subject area. It is also meant to group people together who have similar roles within the PF community, such as researchers or people who are caregivers or spouses of someone living with PF. Groups can also be made private or public, which can encourage members to share more openly online about their experiences of living with a life-threatening illness if they know their post will be protected within a trusted group of individuals, such as all PF patients. Members can also create their own groups.

Privately or publicly message another member
This feature is similar to other social media platforms where you can reach out to someone publicly (similar to a Facebook post) or privately (direct message). Perhaps a member contributed to a topic or started a discussion that really resonated with you, and you would like to learn more. You can private message them to connect directly about what they’ve shared. So far on the forums, this feature has been used for members to connect with the moderator to ask specific questions or to request forums or topics to be started that would be of interest to them.

Add a friend
Many members have shared where they reside in hopes that local networking can take place. Regardless of geographical proximity, some members will form more natural relationships with others and the “add a friend” feature offers a way for those people to keep in touch easily and more frequently. This is similar to having a friend on Facebook or Instagram, as they will see updates and posts that you have made. It’s wonderful to see new friendships beginning to form.

MORE: How online communities can support patients with IPF

Lung Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

2 comments

  1. Joe Tine says:

    I paid $500.00 deposit for the stem cell treatment. I was told a few weeks later I was not a candidate. Now I am no getting any response for my request for a refund.

    • Charlene Marshall says:

      Hi Joe,

      Thanks for reading my column, although I am so sad to hear the news that you mentioned above! Who did you provide the $500 payment to? I am hopeful that it was a credible and/or authentic organization. Best of luck to you, I am so sorry this happened….

      Charlene

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