CFCommunity is an online meeting place created by people with CF, for people with CF. We want to make it easy for those who live with CF to connect.
But it’s more then just a community for us; those born with CF. CFCommunity is also meant for parents, siblings, partners, friends and those working with Cystic Fibrosis.
Learn more about us or...
Just kidding, you already knew that. There is always a bunch of stuff going on that only others with CF truly understand. CFCommunity is a place where we can hang out and talk about all the things that make life with CF different/awesome/lame/special.
Hanging out online is not as good as throwing real-life rave parties across the world, but sadly that plan was scrapped early in our brainstorming process (segregation, pseudomonas blablabla). So we wasted blood, sweat and salty salty tears creating an online meeting place where we would like to hang out and meet others with CF. An international community developed and maintained by us; the Cystic Fibrosis community. We do not want to replace all the awesome existing CF causes and communities out there, we want to bring them together for you to find!
On CFCommunity you can create your profile, start a blog, talk to others with CF and share pictures of your cat nebulizing(that is a joke. do not actually do that!). It is just for people affected by CF and we have made it easy to find and connect with people in similar situations as you.
We hope to see you on CFCommunity soon!
A virtual pseudomonas-free hug from,
The CFCommunity Team
CFCommunity is not just for people who have CF. We have also made it for you; someone who loves someone with CF. A (grand)child, a sibling or your partner, we want to make it easy for you to connect with others in the same situation.
Every person who becomes a member of our community fills in their relationship with CF. We use this information (along with your location and age) to let you easily search for and connect with people on CFCommunity!
By joining our Discussion Groups you can talk about specific subjects in-depth and in private. Or if you need further support or want to stay up to date about all the medical news, our Causes page lets you easily find and connect with all the CF related initiatives out there!
We hope to see you on CFCommunity soon!
Bowe, Sarah & the rest of the CFCommunity Team<
By creating a page for your cause on CFCommunity you can share news, post updates, brochures and connect with the people in our community. If you currently manage a Facebook Page for your cause you get the idea (with the big difference that we actually care about your cause and you reaching your audience without having to pay! ;-)
With CFCommunity we are not trying to get in the way of any of the existing CF related causes. It is our goal to make it as easy as possible for our community members to find and follow the causes that are important to them. If you would like to directly engage with our community you can choose to open a discussion forum but this is completely optional.
You can learn more about starting a Cause Page on CFCommunity by clicking here!
Due to segregation rules it's very hard for patients from the same hospital to ever meet. With CFCommunity we are building a platform where any hospital can very easily create a shared space for patients to talk amongst each other or with hospital staff. This is currently already done by some hospitals through Facebook but we strongly believe that Facebook is the wrong place for this due to lack of privacy and an commercial agenda.
When you create a discussion groups for your hospital a member of your staff has full control of who enters the group. Only after a person has been approved to enter the group the content will be viewable. Additionally your staff can upload documents/brochures to the group which can then directly be viewed by everyone inside the group.
The newsfeed shows you everything that is important to you. So it shows you the updates your friend posts, but also new forum topics in the discussion groups you are part of. And news from the causes you follow. You get the idea.
Because sometimes people get a bit crazy with their updates (Yes we are looking at you Grandma CFChimp. Those 2000 pictures of your grandkids are just lovely), you can filter your newsfeed to only see whatever has your interest.
Only want to see new blogposts from your friends? No problemo. Just want to see the activity in your private discussion group? We won't stop you. Also. We hate ads. And auto playing videos. And selling your data.
Through our member directory you can find people who are in a similar situations as you. Not only can you easily find others based on name, location and interests, but you can find them based on CF related information.
This means you could search for other people with a certain mutation and who have diabetes. Or maybe you and your partner would like to get in touch with others who have a child wish who live close to you. These are just two of the endless scenarios where our search will come in handy!
You can choose exactly which information you would like to share with others, and whether or not you want to be found by others through our search functionality.
On CFCommunity anyone can start or join a group. Groups can revolve around anything: videogames, knitting, city, state, spoken language or even how to take over the world (we suspect this is what the CF Chimps are secretly doing)
When you create a group you can choose between different privacy levels (public or hidden) and even decide if you want to approve members before they can enter your group.
You can also create a group that can only be joined by people in the same situation as you. So if you have CF you can create a group that only people with CF can participate in. We hate segregation as much as you do, but sometimes it's nice to have a secret clubhouse right?!
Join our community of fellow bloggers and create your own blog on CFCommunity! Your blog is linked to your profile and as soon as you publish your latest masterpiece, your friends will see your post in their newsfeed!
Or maybe you want to use your blog to showcase your art. Or a video blog.. or.. well we're sure you can come up with something cool! To help you get started we have a bunch of pre-made designs you can choose from.
Already have a website which is world famous? That's cool too! Fill in the RSS feed of your site and all your new posts will be posted to your profile. Sweet!
There are many amazing CF causes out there, and they are doing great things for people with CF. We want to make it easier for them to be found and for you to stay updated about the awesome work they do. This is why we creatd the Causes Directory where we try to list all the CF related caused across the world.
A cause page can be created by any CF related cause or organisation. Once you decide to follow a cause you will receive updates from them in your newsfeed. If you own or work for a cause you can use your cause page to stay in touch with the CF community. There is a lot of cool things you can add to your cause page, and you can read all about that here!
We respect your privacy and data. Talking about CF is often a deeply personal thing. Sometimes you need to talk about things that are not meant for everyone and sites like Facebook make it as hard as humanly possible to do that. With CFCommunity you can make
It's our mission to keep your data private and we will never show you advertisements or sell your data to anyone. And that's a super mega pinky promise.
Whilst you're reading this our community members are busy adding videos to our CF Video site. And our CFChimp is refining the recipe of his favorite Banana Cake on the Cooking with CF site. We love creating sites in our network that are useful for the community!
How about a medicine database where you can leave your experiences with certain meds and treatments? Or a site where you can ask and aswers CF related questions anonymously? We got plenty of ideas for the future. Have a cool idea for a site?
With CFCommunity we want to create an open, warm, inspirational, funny, living, breathing community of people from over the world who all share one thing; Cystic Fibrosis
Sadly we can't meet each other in real life, but that should not stop us building meaningful friendships. At the same time we understand that connecting online is a bit harder then just meeting each other in real life. This is why we have a group of awesome people that are here to help you. These are our CFCommunity Hosts.
They can answers your questions, show you around the community and are there to help when someone throws a (coughing) fit.
People with Cystic Fibrosis are not allowed to have contact with one another. It increases the chance of lung infections and has the potential to reduce life expectancy. Now imagine that thousands of others also share this genetic disease but you won’t ever be able to meet with them in person. You won’t be able to get together to share stories, a shoulder, a helping hand, a hug, or build a community of support and encouragement.
Online, however, we can interact and engage as much as we want. Online we can create a community and a support network. Online we can make friends. Being around people who truly understand you is important. This realisation is what sparked our ambition to create something for us; the Cystic Fibrosis community. This is why we created CFCommunity.
CFCommunity is 100% dependent on donations! We have managed to start our dream project thanks to many donations from friends, family and people affected by Cystic Fibrosis all across the world. We are now an officially registered cause in the Netherlands and any donation for our cause would be amazing.
By supporting CFCommunity you can make a difference for those who live with CF.
Learn more about supporting CFCommunity