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AdvocacyGeneticsResearch

Cure-E-Us: Imogene at the World Orphan Drug Conference 2018 Part 1

World Orphan Drug Conference 2018, April 25-27 (Part 1) Getting to the Conference! I drove from northern NJ …5 hours along the tiresome NJ Turnpike, over the Delaware Memorial Bridge, through Delaware which seems like the wink of an eye and then through Maryland, only to get confused…is it 695,95, …

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A new hope for CFers
AdvocacyAlternative MedicineGeneticsLiving With CFSupplementsTreatments

A New Hope for CF! (Planetary Biosciences Review – Jan 2018)

To brighten this post up, I will review the exciting supplements Indrepta and TauriNAC using Star Wars parlance… I’m a 46 year old CFer with my original lungs, living in London, England. Following a virus in November last year, the Phantom Menace of mucous was giving me a hard time …

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AdvocacyLiving With CF

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 …

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Human_DNA
AdvocacyGeneticsLiving With CFResearch

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

Dear CF community, My name is Corey Nislow, I am a 51-year-old academic researcher who has spent the last 30 years studying how genes affect traits. For a bit of my background you can find me here: www.creativedestructionlab.com/people/corey-nislow/ and here scholar.google.ca/citations?user=n1e6LlcAAAAJ&hl=en . My reason for writing is simple. Just over a …

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AdvocacyLiving With CFResearchSurveyUncategorizedVideo

Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!

We hope you agree! Tell us what you think..Be Counted! Take the SURVEY NOW! Video by Lance 2020 ~ 1 minute Survey: 9 minutes

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AdvocacyFinancialLiving With CF

Equal Access to Treatment for All with Cystic Fibrosis in the US?

Just in from Tamika Grubbs: Cystic Fibrosis is the same disease for at least 30,000 people in the united states and approximately 70,000 worldwide, but depending on where you reside and what insurance you have there could be big differences in your access and quality of care. I am a …

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Advocacyfeatured_memberSupport

The Unidos pela Vida Institute – spreading knowledge about Cystic Fibrosis in Brazil

Join us today as we learn more about the Unidos pela Vida Institute for Cystic Fibrosis in Brazil. Thank you to Verônica Stasiak and Pamela Mazini Stürmer for supplying us with the below information, translated to English. We wish them good luck with the great work they are doing to spread awareness …

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Advocacyfeatured_memberLiving With CFNews & Events

Tamika Grubbs RN Here to Help our Cystic Fibrosis Community!

Hello, my name is Tamika Grubbs and I am a CF nurse consultant with over 4 years of experience. In the past, I served as an Adult CF coordinator for Central Florida Pulmonary Group, CF Clinical Regional Specialist and CF Manager for Kroger Specialty Pharmacy (formerly TLCRx Pharmacy). I am …

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AdvocacyLiving With CFSocial Media

New on Cystic Fibrosis Social Media (@knowCF)

What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …

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AdheranceAdvocacyfeatured_memberNews & EventsTechnology

Fertile Areas for Experimentation: a New App for Cystic Fibrosis!

One of our Cystic Fibrosis Digital Opinion Leaders speak about the need for an app that could help patients record information and reveal correlations. From one of our Digital Opinion Leaders! I would love an app that allows me to record information that I feel might be important so I …

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