The Pulmonary Fibrosis News forums launched a week ago! Many members have shared the PF forums with their own personal and professional networks and as a result, conversations are starting. Any new initiative takes time to grow, and time for participants to feel comfortable sharing, asking questions and corresponding with other members.
One might ask however, with all the talk of this new launch: what are the benefits of joining our online forum? They are many, but here are a few highlights:
It’s a safe community to connect with other patients.
Unlike other social media platforms, our forums are moderated by a patient living with IPF. Additionally, the team of professionals behind this forum is dedicated to online health, science and research publications for patients living with rare diseases. As a result, questions, correspondence(s) and concerns from patients, caregivers or anyone in the PF community will be tended to quickly and with credible insights. The role of the moderator is to help keep people out of the forums who shouldn’t be there, such as marketers, falsified profiles or trolls that are looking for scamming opportunities. This is in an intentional effort to keep the forum safe and focused on what is important: connecting patients and caregivers with other members of the PF community.
MORE: Tips for using our forums
You can get comprehensive updates on PF in one place.
The team behind this forum will regularly post new research, news, awareness ideas, articles and discussion questions focused solely on benefitting those living in the PF world. This includes links and articles that will benefit, interest and hopefully engage patients, caregivers, friends, family members, colleagues, advocates, medical professionals and researchers. Members are encouraged to share interesting links, videos, articles and discussion topics. The team hopes the PF forums become a place for comprehensive and universal information pertaining to this life-threatening disease.
Welcoming physicians and researchers, patients and caregivers
With the credibility and moderation behind this social media platform, we hope physicians and researchers will participate in the forums, alongside patients and caregivers.
Reducing feelings of isolation and building community
Living with a life-threatening illness is very socially isolating. This is especially true if you don’t live near others with PF. With forums, you can feel part of a community of support, filled with people who truly understand what it is like to live with this disease, no matter where you live. There have been many members who have already commented on the benefits of being part of this community, and to quote one individual: “it is nice to have IPF friends from all over the world.”
MORE: PF and IPF patients share advice for the newly diagnosed
Pulmonary Fibrosis 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.
COPD will not be cured in USA it will take a foreign country. The big pharma companies won’t lose $32 billion a year that is why you weren’t allowed to multiply stem cells here, that is the only way they can help.Plus I have read on clinical trials from 2012 for IPF that helped patients and they still haven’t made them public, reason being it was a generic drug that helped. God bless and keep you hopes up.
With so many phase 3 and 4 in progress right now to stop fibrosis from progressing. I don’t understand why this is not available to all people with this disease. If the fibrosis is spreading we have nothing to loose by trying it
Hi Patricia,
Thanks for writing and sharing your thoughts on this article. I completely agree with you, and wish this was available for all of us with IPF. Your “nothing to lose” comment sure resonated with me, and I just wish there was something that provided us with more hope that was actually accessible for us to try. I appreciate your comments!
Charlene.
For everyone who has chronic rhinosinusitis with copious drainage try Atrovent .6% nasal spray.
It has given me great relief,
Thank you for sharing Barbara!
Charlene.