Getting paid for all the work it takes being a patient or caregiver with Cystic Fibrosis

You never do. Instead, other people get paid for your work: all the treatments: meds and trials, devices, hospitalizations, doctors and health care providers. BUT Perhaps you don’t care…this is the system that has worked since the Hippocratic Oath came into being, declaring the doctors at the helm. Through the life of the internet and the widespread availability of information and because of sites like this one at forums.cysticfibrosis.com, where people get to share and teach, we have all come to realize doctors and healthcare providers are our partners. OR perhaps you feel undervalued or disrespected, IN ANY CASE You can focus on creating a reputation and a work product that others believe is worth something. AND We want to know what you think and our current survey (www.cftechnology.org) is proving that 90% of the respondents (749) want to be paid for their data… BUT “Because people don't make buying decisions based on what's good for you--they act based on what they see, need and believe. Yes, we frequently sell ourselves too short. We don't ask for compensation commensurate with the value we create. It's a form of hiding. But the most common form of this hiding is not merely lowering the price. No, the mistake we make is in not telling stories that create more value, in not doing the hard work of building something unique and worth seeking out.This is another way to talk about marketing. And modern marketing is done with the people we seek to serve, not at them. It's based on the idea that if the customer knew what you know, and believed what you believe, they'd want to work with you. On the principle that long-term trust is worth far more than any single transaction ever could be.” Quoted from Seth Godin’s Twitter feed So What is YOUR Story? Be ready to TELL IT!

Getting paid for all the work it takes being a patient or caregiver with Cystic Fibrosis

A letter from Dr Corey Nislow - the obligation to change the way research is done

What's new on the Cystic Fibrosis social media pages (@KnowCF)?

A letter from Dr Corey Nislow - the obligation to change the way research is done

What's new on the Cystic Fibrosis social media pages (@KnowCF)?

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