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How Do I Connect With Other People In The Cystic Fibrosis Community?

Many people with cystic fibrosis have told us that they have a hard time connecting with other CF-ers. Not being able to meet in person can create both a physical and emotional gap between yourself and the ones who understand CF the most. Our goal here at Cystic-Fibrosis.com is to connect CF patients and caregivers with one another and build an online community that helps bridge the gap.

How do I connect with others on Cystic-Fibrosis.com?

Most people start by reading our articles about life with cystic fibrosis. Almost all the articles on this website are written by someone with CF, and some others are written by care partners who support loved ones with CF. Additionally, our Editorial Team brings the latest news and research updates to the community.

Here are some articles that our readers recommend

Tales from a Young Looking 29-Year-Old
Resources for Financial Support for Cystic Fibrosis Patients
Types of CFTR Modulators: Correctors, Potentiators, and Amplifiers
Experiencing Chronic Pain Due To Cystic Fibrosis

Q&A, stories, forums, and more

Articles are just the tip of the iceberg! You can also ask any questions you may have about cystic fibrosis or its treatments using our Q&A feature. Reaching out using the Q&A tool is a great way to get answers to any of your “is this normal?” questions and hear directly from those who also have CF or have a loved one with CF.

Everyone who is affected by CF has their own unique story to tell. In our Stories section, anyone can share what their experience with CF has been like as well as read stories from other community members.

Forums are another way to dive deeper into a conversation geared around a specific topic. For example, this forum is a place to discuss daily CF treatments, while this one focuses on sharing about loved ones who have passed due to CF.

Our contributor team at Cystic-Fibrosis.com writes so many relatable articles about life with CF. If an article strikes a chord with you, you can feel free to comment and share your thoughts.

What if I want to communicate privately?

If you are concerned about privacy, it’s easy to stay anonymous on Cystic-Fibrosis.com by choosing a username that does not reveal any personal information.

Creating an anonymous username

Choose a username that does not use your first and last name, or any nicknames that might easily identify you. Then register following these few simple steps:

  1. Click here to register for Cystic-Fibrosis.com
  2. Enter your anonymous username
  3. Enter your email address. Your email will not be visible to other users on Cystic-Fibrosis.com. Your email will be used to login to your account and receive your Cystic-Fibrosis.com weekly newsletter.

Using Cystic-Fibrosis.com anonymously

Once you login using the email for your anonymous username, you will be able to participate on Cystic-Fibrosis.com completely anonymously. You can share as much or as little as you want about your experience with cystic fibrosis. If you choose to remain anonymous, you will want to make sure you do not post anything that includes personal information about your identity. Some examples might include:

  • Your location (generally, mentioning your state or country is fine!)
  • Full names of your family members or friends
  • Your place of employment
  • Detailed personal or medical information

Thank you for joining us

Thank you for being a member of Cystic-Fibrosis.com. We hope you enjoy connecting with others in the cystic fibrosis community!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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