Have you ever been lost on where to search? I want to create an environment where people can find the information they want about Cystic Fibrosis as easy as possible. Please let me know if there are any other links that you would like me to hunt down so that the information is easily available to you!
Cystic Fibrosis Information
“The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.” – Cystic Fibrosis Foundation
Not only are they one of the biggest supporters of Cystic Fibrosis research, but they is one of the best websites to find almost any information that you are looking for about Cystic Fibrosis. From a blog that covers lifestyle points of CF to basic information to finding clinical trials, the CFF is always finding new ways to support those with and affected by CF.
“Our mission is to create a world where being born with CF no longer means a life-long struggle, when everyone living with the condition will be able to look forward to a long, healthy life.” – Cystic Fibrosis Trust
This is another one of my favorite resources for Cystic Fibrosis information. This is the UK’s equivalent to the the Cystic Fibrosis Foundation. Although I am a little less familiar with this site, this wonderful foundation brings an incredible amount of Cystic Fibrosis Awareness. I hear about all of their CF awareness campaigns all the way across the pond – plus their Twitter game is on point! Please check out the vast amount of information available here.
“Cystic Fibrosis organisations in Australia provide support and services to people with Cystic Fibrosis (CF) and their carers and families. This is complemented by a commitment to research and a quality improvement program focussing on improved clinical care for people with CF. Each State and Territory (except Northern Territory) has a Cystic Fibrosis organisation devoted to providing a range of support services. These include counselling, information workshops and seminars, case management, comprehensive home care services and professional development for allied health personnel, financial support to take part in physical activities, information on cystic fibrosis for key milestones in a persons development such as, for newly diagnosed parents, for teenagers transitioning from a children’s hospital to an adult hospital and issues people face as an adult CF.” – Cystic Fibrosis Federation Australia
This is a news website specifically tailored to Cystic Fibrosis. It keeps you current on research, medical advances, community events, and so much more. They provide resources for almost anything you can think of relating to Cystic Fibrosis. Just check out their website and you will see what I mean!
Cystic Fibrosis Charity
“Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event. Each year, more than 125,000 people participate in hundreds of walks across the country to support the Foundation’s mission to cure cystic fibrosis. The funds raised from Great Strides helps provide people with CF the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.” – Great Strides
Please make sure to check out my fundraising page here or my Great Strides page under Wendy’s Walkers. It is an amazing event that myself and my family have been participating in for as long as I can remember.
“The CFLF assists in providing avenues toward healthy and active lifestyles through recreation, thereby empowering and educating people with Cystic Fibrosis on the critical psychological, social, and emotional connections between their lifestyle and their health.” – CFLF
The Cystic Fibrosis Lifestyle Foundation (CFLF) is a charitable foundation that raises money to grant CF patients the ability to exercise. CF patients can apply to get funding for just about any activity under the sun that gets them active. Exercise is a key component to staying health and prolonging life. The CFLF is committed to helping CF patients maintain a healthy lifestyle.
Cystic Fibrosis Community
“Real. Positive. Community.” – CysticLife
Cystic Life is a Cystic Fibrosis social website. It is basically the Facebook for CF patients. This is an amazing resource because it serves as a place for CF patients to connect in a way that we normally would not be able to. High infection rate leads to many people fighting their disease alone or with little support from people that are also going through battling the disease. I was led to this website after speaking with a CF friend that I had made about how lonely I felt in my fight. I am so glad that I was able to find this website and hope that you find it connecting too. This platform makes it really easy to ask questions and share experiences!
GeneFo is a social website where users share their experiences with different medications, treatments, doctors, and symptoms. It is really cool to see what is effective for some and not for others. It is an excellent social resource to give and get opinions on different regimens to try and improve your health. The admins are very active on the site, which is really helpful. Not can the site be an awesome education tool, but it allows you to encourage each other on compliancy. Another key aspect.
There is inspiration all around you – just open your eyes and your heart.