A community for people affected by Cystic Fibrosis!
CF Community is een online ontmoetingsplek gemaakt door mensen met CF, voor mensen met CF. We willen het makkelijk maken voor iedereen die leeft met Cystic Fibrosis om elkaar zo te vinden.
Maar het is meer dan alleen een community voor onszelf; wij die zijn geboren met CF. CF Community is er ook voor ouders, broers en zussen, partners, vrienden en degenen die werken met Cystic Fibrosis.
Wat voor rol speelt Cystic Fibrosis in jouw leven?
Breaking news: Leven met CF is anders!
Grapje, dat wist je al lang. Er zal altijd veel gebeuren wat alleen echt begrepen wordt door anderen met CF. Met CF Community hebben we een plek gecreëerd waar we kunnen chillen en praten over alle dingen die het leven met CF anders/geweldig/stom/speciaal maken.
Online samenkomen is natuurlijk niet hetzelfde als keihard samen feesten in het echte leven, maar helaas moesten we die plannen al vroeg in het brainstorm proces weer stopzetten (segregatiebeleid, pseudemonas, blablabla).
En dus hebben we met bloed, zweet en zoute, zoute tranen gewerkt aan een online ontmoetingsplek waar we graag rond willen hangen om anderen met CF te ontmoeten.
Een internationale community ontwikkeld en bijgehouden door ons; de Cystic Fibrosis community. Onze bedoeling is niet om de geweldige reeds bestaande CF goede doelen, websites en communities te vervangen. We willen ze graag bij elkaar brengen zodat ze nog beter te vinden zijn!
Op CF Community kun je een profiel aanmaken, een blog beginnen, praten met anderen over CF en foto’s delen van je kat die aan het vernevelen is (dat is een grapje, doe dat aub niet echt).
Het is puur voor mensen die op de een of andere manier te maken hebben met CF en we hebben het zo makkelijk mogelijk gemaakt om mensen te vinden die in dezelfde soort situatie zitten als jij zelf.
We hopen je snel te zien op CF Community!
Een virtuele pseudomonas-vrije knuffel,
het CF Community Team
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Een ontmoetingsplek voor iedereen die met Cystic Fibrosis te maken heeft
CF Community is niet alleen voor mensen die zelf Cystic Fibrosis hebben. We hebben het ook gemaakt voor jou; iemand die van iemand met CF houdt. Of dat nou je (klein)kind, broer, zus, vriend(in) of partner is, we willen het makkelijk maken voor jou om mensen te ontmoeten die in dezelfde situatie zitten als jij.
Iedereen die lid wordt van onze community vult bij het aanmelden zijn of haar relatie tot CF in. We gebruiken deze informatie (net als je locatie en leeftijd) om dezelfde soort mensen op te zoeken, zodat jij daar makkelijk contact mee kan maken op CF Community!
Dankzij onze Discussie Groepen kun je praten over alle onderwerpen, zonder je zorgen te maken over wie er allemaal meeleest. En ben je op zoek naar verdere ondersteuning, of wil je op de hoogte blijven over wat er gebeurt in CF land? Op de Initiatieven pagina vind je alle CF gerelateerde organisaties die daarin wat voor je kunnen betekenen.
We hopen je snel te verwelkomen op CF Community!
Word lid van CF Community
Op CF Community brengen we alle CF gerelateerde organisaties bij elkaar
Door het aanmaken van een pagina voor jouw organisatie op CF Community kun je nieuws, updates en brochures delen en zo makkelijk contact leggen met de mensen in onze community.
Als je op dit moment al een Facebook Pagina hebt voor je organisatie, dan weet je al een beetje hoe het werkt!
Het is niet zo dat we met CF Community de reeds bestaande CF organisaties willen vervangen.
Het is ons doel alle CF gerelateerde organisaties samen te brengen en het zo makkelijk te maken voor onze community leden om ze te vinden en te volgen.
Met jouw organisatie’s pagina op CF Community is het makkelijk je volgers op de hoogte te houden van nieuws, toekomstige evenementen en nog veel meer.
Je organisatie zal ook zichtbaar zijn op de Initiatieven pagina, waar onze community gericht naar organisaties kan zoeken, gebaseerd op locatie, taal en doel. Wat brengt dat ons? Toegankelijkere informatie voor mensen die te maken hebben met Cystic Fibrosis!
Word lid van CF Community
Gemakkelijke communicatie tussen patient en behandelaar via een privé groep
Het aanmaken van een privé patiënten groep voor jouw ziekenhuis op CF Community is voor het behandelend team een geweldige manier om in contact te blijven met de patiënt.
Als je op dit moment een Facebook Page hebt voor je ziekenhuis, dan weet je al een beetje hoe het werkt!
Op CF Community zijn we van mening dat veel social media platformen niet geschikt zijn voor jouw patiënten groep.
Al zijn bepaalde social media platformen een handige manier om informatie te delen met je patiënten, wordt er veel (gevoelige) data gecollecteerd van jou en de patiënt voor commerciële doeleinden.
Whilst Facebook is a convenient way to share information with your patients, sensitive data is used by Facebook to collect data on your patients and target them with advertisements constantly. They run a business based on selling valuable data to external parties. This makes us very sad monkeys.
That’s why we’ve spent a lot of time building our Hospital Directory. Every hospital can create a private discussion group for it’s patients where they can hang out, ask questions and find important information provided by your staff (like documents or brochures). The Group Administrator can easily invite patients via email or accept/reject members based on their CFCommunity profile!
Interested? Our documentation and team of volunteers are here to help you get started!.
Breaking news: Life with CF is different!
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
Join CFCommunity
A meeting place for everyone affected by Cystic Fibrosis
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!
On CFCommunity we are bringing all CF related causes together
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 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. Through your cause page you can easily inform your fans by displaying news from your website, listing your upcoming events and much more.
Your Cause will also be listed in our Causes directory where our community can search for causes based on location, language and goals. The end result? More easily accessible information for people with Cystic Fibrosis across the globe!
Easy Communication Between Patients and Staff via your Hospital Group
Creating a private patient group for your hospital on CFCommunity is a great way for you care team to stay in touch with your patients.
If you currently manage a Facebook Page for your hospital you get the idea!
With CFCommunity we strongly believe that Facebook is not suited for your patient group.
Whilst Facebook is a convenient way to share information with your patients, sensitive data is used by Facebook to collect data on your patients and target them with advertisements constantly. They run a business based on selling valuable data to external parties. This makes us very sad monkeys.
That’s why we’ve spent a lot of time building our Hospital Directory. Every hospital can create a private discussion group for it’s patients where they can hang out, ask questions and find important information provided by your staff (like documents or brochures). The Group Administrator can easily invite patients via email or accept/reject members based on their CFCommunity profile!
Interested? Our documentation and team of volunteers are here to help you get started!.
Here's how it works....
Your Newsfeed Everything new in one place.
The newsfeed keeps you up to date about everything that’s happening in the community. It shows updates from your friends, new discussion topics in the groups you are part of and new blog posts and comments from all of the blogs/sites that you follow
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! Oh and we hate advertisement and other useless stuff (we’re looking at you Facebook).
Members Connect to people in similar situations
You can use our awesome search options to quickly find people in similar situations as you. You can get as specific as you like! For example you could search for people who speak Dutch, are above 20 years old and have experience with something you’re curious about!
Once you’ve found someone you’d like to connect with simply send them a friend request and you can chat with them directly via our “MonkeyMessenger” or send them a private message!
Groups Create or join groups that matter to you.
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?!
Sites One Big Happy Family of CF Related Blogs
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! Like your site to your profile and all your new posts will be posted to your profile. Sweet!
Causes Follow The Causes You Care About
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 creaetd the Causes Directory where we try to list all the CF related causes 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!
Privacy: What you do on CFCommunity stays on CFCommunity
Talking about CF is often a deeply personal thing and sometimes you might want to talk about things that are only meant for those who can truly relate.
For example you can create a private group only accessible for people with CF! Or if you’re a parent you can do the same but make your group only accessible for other parents.
And we’ll respect your privacy more than anything. We’ll never run advertisements or share your data with anyone. Super Duper Mega Pinky Promise.
And much more... We're busy monkeys!
Our community is always creating!
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 CF Chef 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? Simply get started!
I'm new to Cystic Fibrosis, why is CFCommunity needed?
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.
