FinancialLiving With CFResources

ENF Scholarship and CF summer research program applications now open

  Applications for the Elizabeth Nash Foundation scholarship and summer CF research programs are now available. Please find relevant information below. Scholarship program The Elizabeth Nash Foundation awards scholarships to assist persons with CF to pursue undergraduate and graduate degrees. Grants range from $1,000 to $2,500 and are made directly to …

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FinancialResourcesTreatments

D3forME Transdermal Vitamin D Patch: do you qualify?

Learn more about the eligibility criteria and how to apply for the D3forMe Transdermal Vitamin D patch through Healthwell’s Cystic Fibrosis Patient Assistance Program. Written by Tamika Grubbs, CF nurse consultant D3forMe proudly announces participation in Healthwell’s Cystic Fibrosis Patient Assistance Program. The D3forME Transdermal Patch is for patients who can’t absorb enough …

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AdheranceResourcesTechnology

An App for Cystic Fibrosis to bring Data to Market

Update on our app for Cystic Fibrosis: the pilot study We are getting ready for our Pilot Study: 20 patients for 30 days using a customizable app that measures 18 different modules for CF.  I recorded the above 2 minute audio slide show overview of the presentation I gave at …

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FinancialLiving With CFResourcesSupport

AbbVie scholarship for students with cystic fibrosis

Thanks to 25-years of medical advancement, the goal of pursuing higher education for many students with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system, is more achievable than ever before. AbbVie announced the opening of the application period for the AbbVie CF Scholarship program, marking …

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DiagnosisGeneticsLiving With CFResources

New Guidelines for Cystic Fibrosis Diagnosis

New Guidelines for Cystic Fibrosis Diagnosis A group of 32 scientists from nine countries have updated the guidelines for Cystic Fibrosis diagnosis. They published an article last month in The Journal of Pediatrics and the synopsis can be found here in Science Daily. The scientists looked at data from people …

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FinancialLiving With CFResourcesSupportTransplantsTreatments

Miracle Flights: free medically-related air travel for ill patients, including for Cystic Fibrosis treatment

Struggling to cover the cost of air travel to receive your medical care? Miracle Flights assists patients through free commercial air travel to obtain special medical care. Read more about this fantastic organization and how to apply below…   Blog article written in conjunction with Brooke Freeman, Community Outreach Officer …

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AdheranceLiving With CFResourcesTreatments

Think INSIDE the box for easier inhaled treatments – cystic fibrosis treatment

It’s taken me a long time, but I finally have a ‘system’ that has made inhaled treatments easier to keep up with. Background In childhood, I was very compliant with the CF treatments, as my parents helped me. I didn’t need to think about it; it just happened. In my late …

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AdvocacyFinancialLiving With CFResources

Make Friends with your Legislators! Tell them about Cystic Fibrosis.

Especially for Cystic Fibrosis, how the government acts on the Accountable Care Act  (ObamaCare) does make a difference! Since Healthcare was such a big issue in the last election: Keep in touch with your legislators…YOU HIRED THEM!  They need to hear from YOU! Make them your FRIENDS! Congress: Find your …

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Living With CFResourcesTransplants

The Bible for Transplants: make data driven decisions about lung transplant

The Scientific Registry of Transplant Recipients (SRTR) helps patients make data driven decisions about their transplant, such as lung transplants in Cystic Fibrosis. Lots of great information in The Scientific Registry of Transplant Recipients (SRTR) The registry supports ongoing evaluation of the status of solid organ transplantation in the United …

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FAQsLiving With CFResourcesTransplants

Organ Donation – Surprising Facts

Cystic Fibrosis patients make up 12 percent of the waiting list for lungs. New York State changed the legal age of consent for organ donation from 18 to 16 years old to improve number of donors. Read more below: Last week, New York State changed the legal age of consent …

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