Living with CF - Blogs, news and research

VIEW THE LATEST ARTICLES BELOW

APP for CFLiving With CF

Technology’s Place in the Lives of Patients with Cystic Fibrosis

March 16, 2019
52 0
featured_memberLiving With CFUncategorized

Gratitude: came in my inmail!

November 23, 2018
135 0
Living With CF

Going Back to School with Cystic Fibrosis (from our Archives)

September 8, 2018
76 15
featured_memberLiving With CFNews & Events

Why Cystic Fibrosis and Blockchain? by LittleLab4CF

August 29, 2018
26 0
FinancialGeneticsLiving With CF

LittleLab4CF (our own Geneticist with Cystic Fibrosis) Helps us Understand Pharma/Patients and Blockchain

August 26, 2018
29 2
WelcometoCFTechnology
APP for CFLiving With CF

Welcome to CFTechnology.org video

July 7, 2018
30 1
genomic-phenotypic-diaries-fig2
APP for CFLiving With CFSurvey

A New Model for Patient Engagement for Cystic Fibrosis Patients and Caregivers

July 7, 2018
49 1
Oxygen mask on white
FinancialLiving With CFResourcesSupport

SSDI for people with Cystic Fibrosis

July 2, 2018
195 0
Survey_graphic
APP for CFLiving With CF

CURE-E-US: Our CF community has an UNMET NEED (Part 3)

May 12, 2018
24 0
Medicare_CF
Living With CFResources

Medicare and Cystic Fibrosis

May 7, 2018
96 3
CysticFibrosis.com is one of the world's largest social media networks dedicated exclusively to the cystic fibrosis community. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. Read our website disclaimer.

CysticFibrosis.com Newsletter Registration

View the blogs by category/comments by using the filters below, or scroll down to view all the blog archives at a glance.
Gunnar_2
A Conversation with Gunnar Esiason
14.5k September 12, 2017
gene-mutations-in-CF
Cystic Fibrosis genetics: Know Your CF Mutations
4.3k November 21, 2015
takemedicine
Ten Hurdles to Cystic Fibrosis Patient Adherence
3.9k November 21, 2015
24h4 (468x312)
CF Innovators: Blown Away
3.9k
Indrepta C
Indrepta C now available for nonsense mutations
3.8k March 17, 2017
shutterstock_156419843-770x470
Concert Pharma’s Modified Version of Cystic Fibrosis Therapy Ivacaftor Outperforms Kalydeco in Early Testing
3.4k May 19, 2014
WelcometoCFTechnology
Welcome to CFTechnology.org video
30 July 7, 2018
genomic-phenotypic-diaries-fig2
A New Model for Patient Engagement for Cystic Fibrosis Patients and Caregivers
49 July 7, 2018
Oxygen mask on white
SSDI for people with Cystic Fibrosis
195 July 2, 2018
Survey_graphic
CURE-E-US: Our CF community has an UNMET NEED (Part 3)
24 May 12, 2018
Medicare_CF
Medicare and Cystic Fibrosis
96 May 7, 2018
jeannebarnettraredrugscongress
Cure-E-Us: Imogene at the World Orphan Drug Conference 2018 Part 1
129 May 2, 2018
plumes economiques

c'est superbe!

plombier evry

j'ai trop aimé, c'est très intéressant!

question repense

je vous souhaite un bon continuation

astuce habitats

je vous souhaite un bon continuation , j’ai trop aimé!

calculatrice en ligne

bonne continuation , excellent article

calculatrice facile

excellent

FILTER BY CATEGORY

FILTER BY MONTH

Blog archive at a glance

MORE BLOGS, NEWS AND RESEARCH ARTICLES

Technology’s Place in the Lives of Patients with Cystic Fibrosis
52 March 16, 2019
Gratitude: came in my inmail!
135 November 23, 2018
Going Back to School with Cystic Fibrosis (from our Archives)
76 September 8, 2018
Why Cystic Fibrosis and Blockchain? by LittleLab4CF
26 August 29, 2018
LittleLab4CF (our own Geneticist with Cystic Fibrosis) Helps us Understand Pharma/Patients and Blockchain
29 August 26, 2018
WelcometoCFTechnology
Welcome to CFTechnology.org video
30 July 7, 2018
genomic-phenotypic-diaries-fig2
A New Model for Patient Engagement for Cystic Fibrosis Patients and Caregivers
49 July 7, 2018
Oxygen mask on white
SSDI for people with Cystic Fibrosis
195 July 2, 2018
Survey_graphic
CURE-E-US: Our CF community has an UNMET NEED (Part 3)
24 May 12, 2018
Medicare_CF
Medicare and Cystic Fibrosis
96 May 7, 2018
Cure-E-Us: World Orphan Drug Congress Part 2
4 May 5, 2018
jeannebarnettraredrugscongress
Cure-E-Us: Imogene at the World Orphan Drug Conference 2018 Part 1
129 May 2, 2018
Lungs
Does Medicare Cover Lung Transplants?
641 April 26, 2018
30184443_10100500318834163_2038331598_n
Coping with the Loss of a Spouse from CF
560 April 17, 2018
Cure E Us
Cure-E-Us Where is our Survey Leading?
108 March 22, 2018
AI
Artificial Intelligence (AI)as told to Imogene by LittleLab4CF
134 March 4, 2018
ENF_logo
ENF Scholarship and CF summer research program applications now open
194 February 21, 2018
Lungs1
Stem cell transplants for lung regeneration – promising breakthrough in China
1.3k February 17, 2018
DNA strand with genetic code and base formulas
LittleLab4CF on the potential of an enormously valuable Genomic Diary
101 February 10, 2018
Egg cooker nebulizer sterilizer white
DIY nebulizer sterilizer hack for Cystic Fibrosis treatments (member story)
780 February 3, 2018
FavoriteProducts
Fashion tips and favorite products for my Cystic Fibrosis body
445 January 31, 2018
Survey: Future Casting for our Cystic Fibrosis Community! (Updates)
68 January 29, 2018
A new hope for CFers
A New Hope for CF! (Planetary Biosciences Review – Jan 2018)
1.2k January 23, 2018
blockchainimage
Blockchain, Cystic Fibrosis and Linnia
357 January 17, 2018
social media feature pic jan 2017
What’s new on the Cystic Fibrosis social media pages (@KnowCF)?
113 January 10, 2018
costbig-458x300
Getting paid for all the work it takes being a patient or caregiver with Cystic Fibrosis
267 January 10, 2018
Human_DNA
A letter from Dr Corey Nislow – the obligation to change the way research is done
198 December 30, 2017
cure e us
Cure-E-Us…Cystic Fibrosis 2018!
1.1k December 29, 2017
juliablockchain
A Young Mom is Exploring BlockChain Technology
187 December 9, 2017
digital camera before cell phones
Gratitude! Remembering Blake’s example!
76 November 15, 2017
Market Research for Pulmozyme Users: Gift Cards given for an on line interview.
523 November 3, 2017
Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!
196 October 23, 2017
Grubbs-headshot1497372210
Equal Access to Treatment for All with Cystic Fibrosis in the US?
654 September 28, 2017
RxDigitalMarketing-logo2
An Interview: Jeanne Barnett and RXDigitalMarketing
120 September 19, 2017
tauriNAC-1
TauriNAC Now Available
1.5k September 13, 2017
Gunnar_2
A Conversation with Gunnar Esiason
14.5k September 12, 2017
Unidos-pela-Vida_Logos_sml1
The Unidos pela Vida Institute – spreading knowledge about Cystic Fibrosis in Brazil
154 September 12, 2017
wizard
A Brain, A Heart, Courage: the e-Patient community for Cystic Fibrosis
150 August 21, 2017
VitaminD_patch2
D3forME Transdermal Vitamin D Patch: do you qualify?
505 August 19, 2017
200679-path-leaves-forest-sunlight-mist-trees-grass-sun_rays-nature-landscape-dirt_road-748x479
Orkambi has simply changed my life…a Cystic Fibrosis reflection
2k August 19, 2017
Spirometry test at clinic
Digital Spirometry and the Cystic Fibrosis patient
393 August 4, 2017
social media feature pic jan 2017
New on Cystic Fibrosis Social Media (@knowCF)
79 August 3, 2017
CFapp_pilot
An App for Cystic Fibrosis to bring Data to Market
201 July 24, 2017
Grubbs-headshot1497372210
Tamika Grubbs RN Here to Help our Cystic Fibrosis Community!
224 July 10, 2017
social media feature pic jan 2017
New on Cystic Fibrosis Social Media (@knowCF)
77 July 10, 2017
thedatawillseeyou now
Fertile Areas for Experimentation: a New App for Cystic Fibrosis!
154 July 7, 2017
charlesdarwinImogene
The Data Will See You Now! and Cystic Fibrosis Data is Valuable!
184 July 6, 2017
Image by Evgenios Metaxas MD MSc, Pulmonologist http://creativecommons.org/licenses/by-sa/3.0
Home Monitoring vs. Traditional Care in CF: Year-Long Study Results
344 July 4, 2017
slide2_02
What is Cystic Fibrosis – Infographic
3k June 21, 2017
unnamed-5
Amber’s Cystic Fibrosis Miracle
1.3k June 16, 2017
LCI image small
Lung Clearance Index Improved in Children Ages 6-11 on Ivacaftor/Lumacaftor
325 June 15, 2017
Enchilada
Enchilada Casserole Anti-inflammatory Recipe (Cystic Fibrosis diet)
518 June 6, 2017
LowCarb_pizza
Low carb Cauliflower Crust Pizza (Cystic Fibrosis diet)
155 June 6, 2017
Indrepta
Personal Indrepta Results
1k May 23, 2017
graphic by By Lbudd14 (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
Outcomes and Tolerances in Cystic Fibrosis Treatment Lumacaftor/Ivacaftor
419 May 22, 2017
Chips
Potato Chip Cookies (Cystic Fibrosis diet)
670 May 22, 2017
OilveOil Cake
Lemon Olive Oil Cake (Cystic Fibrosis Diet)
236 May 14, 2017
chocolate
Bacon Chocolate Chip Cookies (Cystic Fibrosis Diet)
109 May 8, 2017
Grape_salad
Creamy Grape Salad Recipe (Cystic Fibrosis diet)
156 May 8, 2017
Yogurt-Gummies1
Yogurt Gummies recipe (Cystic Fibrosis diet)
1k May 8, 2017
Cfdiet
Cystic Fibrosis diet: Recipe Contest! Win one of 4 x $50 Gift Cards
381 May 1, 2017
Pup fell asleep with the Vest
New on Cystic Fibrosis Social Media (@knowCF)
66 April 30, 2017
The yogurt and kefir milk in the picture are lowfat but other brands do carry whole or full-fat versions.
Full-Fat Fermented Dairy May Cause Less Inflammation Than Regular Dairy
986 April 23, 2017
T alpha 1
New drug (Thymosin alpha 1) discovery: potential for Cystic Fibrosis treatment
3.2k April 17, 2017
Indrepta C
Indrepta C Lottery Winners
357 April 15, 2017
AbbVie
AbbVie scholarship for students with cystic fibrosis
456 April 8, 2017
social media feature pic jan 2017
New on Cystic Fibrosis Social Media (@knowCF)
98 April 4, 2017
Orkambi Study On Children Age 6-12 With DDF508: Cystic Fibrosis Treatment
804 April 2, 2017
hard to treat Burkholderia cenocepacia
University of British Columbia studying B-cepacia with some success!
280 March 29, 2017
hearing loss
Risk of Hearing Loss from IV Aminoglycosides in Cystic Fibrosis
375 March 26, 2017
Indrepta C
Indrepta C now available for nonsense mutations
3.8k March 17, 2017
concert pills
Treatment for Cystic Fibrosis: Vertex Acquires Concert’s CFTR Potentiator CTP-656
545 March 13, 2017
pollution chimney-324561_640
Respiratory Health and Air Pollution
352 March 7, 2017
pseudomonas2
Does Ivacaftor Affect Lung Bacteria in Cystic Fibrosis?
944 February 27, 2017
social media feature pic jan 2017
New on our Cystic Fibrosis Social Media (@knowcf)
66 February 26, 2017
Exercise
Research on CF and Exercise in Cystic Fibrosis treatment
823 February 23, 2017
PGCFT
Evolution of a New App for Cystic Fibrosis management
543 February 20, 2017
heart fibrosis
Pulmozyme May Extend Lives of People Without Cystic Fibrosis
1.1k February 12, 2017
cftr2
New Guidelines for Cystic Fibrosis Diagnosis
1.3k February 7, 2017
amazon
Cystic Fibrosis fundraiser: Support us through AmazonSmile at no additional cost to you
287 January 31, 2017
social media feature pic jan 2017
New on our Cystic Fibrosis Social Media (@knowcf)
88 January 29, 2017
Foam roller blog
Cystic Fibrosis treatment: Foam roller benefits – a member blog
1k January 29, 2017
nu me
A Day with Portable Genomics for Cystic Fibrosis management
169 January 24, 2017
DNA CRISPR
Radio Interview: CRISPR Gene Editing (relevant to Cystic Fibrosis genetics)
316 January 21, 2017
Miracle_Flights4
Miracle Flights: free medically-related air travel for ill patients, including for Cystic Fibrosis treatment
588 January 13, 2017
burkholderia
Cystic Fibrosis Lung Microbiome: Diversity and Lung Function
344 January 11, 2017
cigarette-666939_640
CFTR Function and Cigarette Smoke
777 January 7, 2017
honey
Potential benefits of honey in Cystic Fibrosis Treatment
2.2k January 2, 2017
artificial_pancreas2
(Cystic Fibrosis Diabetes) First FDA approved artificial pancreas and other 2016 Digital health highlights
702 December 26, 2016
Gel Caps
Vitamin D Supplements May Help Improve Lung Function in Cystic Fibrosis
284 December 22, 2016
orkambi_logo
ORKAMBI® (Lumacaftor/Ivacaftor) latest news: Germany, Australia availability
276 December 19, 2016
stylecomfy_redbubble_products_storm_white
Member post: goals and managing expectations with Cystic Fibrosis
224 December 16, 2016
orkambi
Lumacaftor/Ivacaftor longer trial on Heterozygous F508del Cystic Fibrosis Patients
1.2k December 8, 2016
thinkinginsidethebox
Think INSIDE the box for easier inhaled treatments – cystic fibrosis treatment
484 December 5, 2016
3dprotein
Cystic Fibrosis Genetics: First Structural Map of Cystic Fibrosis Protein
193 December 3, 2016
photo of Staph bacteria from NIH (public domain)
The Lung Microbiome and Dysbiosis
287 November 18, 2016
legislation
Make Friends with your Legislators! Tell them about Cystic Fibrosis.
190 November 16, 2016
rx-redesign
Redesigning Prescription Medication Inserts
53 November 13, 2016
image
Webinar: Infection Prevention During Bronchoscopy
105 November 9, 2016
friendship
10 Ways to Help When a Friend is Diagnosed With a Chronic Disease
156 November 9, 2016
Flourescent Sensor is a new Low-Cost Tool for Cystic Fibrosis diagnosis
158 November 4, 2016
conference-303369_640
North American Cystic Fibrosis Conference 2016
251 November 2, 2016
research
Thank YOU! This research is complete!
248 October 28, 2016
vertex
Mom takes on Vertex CEO about pricey Cystic Fibrosis Treatment Drugs
229 October 26, 2016
bluetooth
Bluetooth-enabled tech shows promise for adherence in Cystic Fibrosis treatment
106 October 20, 2016
lungs-37825_640
Lung Bio-engineering Clinical Trial may benefit cystic fibrosis patients
182 October 14, 2016
organmap
The Bible for Transplants: make data driven decisions about lung transplant
210 October 7, 2016
copper
Copper in Hospitals to Limit Cross-Infection
180 October 5, 2016
mac
Distinguishing Relapse from Reinfection in MAC
468 September 27, 2016
globalgenes
Rare Disease Patient Advocacy Summit
108 September 19, 2016
2016-09-14-15-04-12
How Much Do Orphan Drugs Cost?
134 September 14, 2016
pillsfuturicity
Survey Shows A Lot of People Save Leftover Painkillers
83 September 13, 2016
mediq
Med-IQ: Creating a Partnership for Adherence in Cystic Fibrosis treatment
106 September 8, 2016
ocean-918999_640
13 year-old with Cystic Fibrosis is a Top Surfer in South Carolina
202 September 7, 2016
2016-08-31 18.55.51
A New Tool for Cystic Fibrosis Lung Monitoring
273 August 31, 2016
organ donor ribbon small
Organ Donation – Surprising Facts
1k August 23, 2016
homemade yogurt - smaller
First Winner! Probiotic/Prebiotic Recipe Contest (Cystic Fibrosis diet)
238 August 15, 2016
cff drug development 2
Drug Development Pipeline for Cystic Fibrosis treatment
794 August 9, 2016
Rfc1394-Red-barn-300px
Barnyard Dust and Preventing Asthma in Children (one of many Cystic Fibrosis symptoms)
378 August 5, 2016
sputum cup
New Antibiotic Discovered in our Noses could help treat Staph and MRSA
150 July 28, 2016
Probiotics and Prebiotics
Probiotics and Prebiotics in Food – benefits in the cystic fibrosis diet
1.2k July 6, 2016
intestines-1468807_640
Intestinal Bacteria in Research Articles: immune system and digestion
210 June 30, 2016
CRopDNA
CRISPR Finds Mutated DNA and Is Okayed for Clinical Trial
547 June 24, 2016
ATS article global warming
Climate Change and Respiratory Infections (cystic fibrosis symptoms)
333 June 21, 2016
Survey teens
Survey Filled – Thank you!
252 June 16, 2016
Gut
Fecal Microbial Transplants and “Gut” by Guilia Enders
659 June 16, 2016
vendanta
Bugs into Drugs: Beyond Fecal Transplants
79 June 16, 2016
gold_cage_1600-1400x400
DNA ‘cages’ deliver drugs with zap of light
50 June 13, 2016
clinicaltrialsapp
Matching Volunteers to Clinical Trials by App
92 June 12, 2016
patient assistance controversy
Understanding Pharma Controversies in the News
280 June 8, 2016
firstword
Cystic Fibrosis Patients and Caregivers Becoming Experts in the Digital Arena
130 June 2, 2016
otoscope
New low budget otoscope for early warning of hearing loss
163 May 25, 2016
This cartoon is from AllanAnalytics
Looking for a career choice? What to study?
73 May 25, 2016
spirocall
SpiroCall: Lung Function Measured by Phone
624 May 16, 2016
transplant
Cystic Fibrosis treatment: lung transplant facts and member experiences
1.8k May 13, 2016
cfmainimagewabibaby
Wabi Baby Steam Sterilizer Contest
599 May 9, 2016
loveandlogic
Parenting Children with Health Issues: From our Archives
111 May 3, 2016
Character
The Science of Character
38 April 30, 2016
Cystic Sisters
Documentary: Sisters living with Cystic Fibrosis
406 April 27, 2016
1920px-Ewe_sheep_black_and_white-150x150
When a Bad Animal Model is Good: Cystic Fibrosis
49 April 23, 2016
superhero
SuperHero DNA
190 April 21, 2016
ncib logo
Cystic Fibrosis testing: Genetic and Rare Diseases Information Center
181 April 20, 2016
sinuses
Cystic Fibrosis symptoms: Mayo clinic’s sinusitis treatment suggestions
528 April 18, 2016
lungs
Better Lung Scanning Technology
63 April 16, 2016
survey
Survey of Cystic Fibrosis Patients by GeneFo
220 April 13, 2016
Screenshot_2016-04-20-21-35-38-1-1
Individual Counseling Offered
143 April 11, 2016
depression 2
The Importance of Treating Depression in People with Cystic Fibrosis
164 April 6, 2016
xbox kinect
Xbox Kinect to Monitor Lung Function
286 March 30, 2016
smiles
Social Security Disability Benefits for people with Cystic Fibrosis
1.5k March 24, 2016
pseudomonas
In the News: Inhaled Levofloxacin & QIDP Designation
216 March 23, 2016
pilates 3
Cystic Fibrosis: Three pilates exercises that may increase breathing strength
1k March 16, 2016
governmentteam
Put your legislators on your team!
79 March 14, 2016
suprasensor
Surprising Benefits from CF Research
193 March 9, 2016
20151219_172622
What is an Anti-Inflammatory Diet?
1.3k February 29, 2016
itsbeenagoodlifedad1
It’s Been a Good Life Dad: My Son’s Struggle with Cystic Fibrosis
608 February 27, 2016
3-d ears
3D Printed Ear, Bone, and Muscle Tissue
122 February 24, 2016
costbig
Financial: Your Questions from the 2015 Survey
137 February 23, 2016
newyorkerdecember62004
Dr. Warren Warwick, The Bell Curve
506 February 20, 2016
3dlivermedium
UCSD’s 3D Printed Liver Cells Most Liver-like Yet
191 February 17, 2016
EnzymeFAQ
Enzymes – Frequently Asked Questions
391 February 15, 2016
bubby's enzymes
Toddler Bubby, taking enzymes for Cystic Fibrosis treatment
191 February 15, 2016
Empathy
Brene Brown on Empathy
131 February 12, 2016
sharktank image
Sharktank: Jim Caldwell
1.1k February 11, 2016
nutraceuticals
Your Questions on Nutraceuticals
184 February 11, 2016
adayinthelife
How cystic fibrosis promotes lung infections
258 February 10, 2016
welobby
We Lobby
116 February 9, 2016
a love worth giving
Featured: A Love Worth Giving
82 February 6, 2016
Hypertonic Saline
Cystic Fibrosis treatment: Hypertonic Saline Questions
2.4k February 4, 2016
Self Management Tree
YOUR DATA! Your Questions on Self Management
386 February 3, 2016
Lancet logo
Trial results of Ivacaftor in Cystic Fibrosis children ages 2-5
224 January 22, 2016
crispr
Genome editing with CRISPR-Cas9
655 January 13, 2016
cfmainimage
New to CysticFibrosis.com
441 November 23, 2015
subimage_top
Newly Diagnosed: What is Cystic Fibrosis
2.3k November 22, 2015
CFGeneticTesting_header
Cystic Fibrosis testing: Genetic testing and sweat test
1.2k November 22, 2015
CFTaxDeductions_header
A Conversation on Filing Taxes with Cystic Fibrosis
1.5k November 22, 2015
CFInfoNeedsSurvey_header
Cystic Fibrosis Resource and Information Needs Survey
170 November 22, 2015
ParentingTips_header
Parenting Tips
249 November 22, 2015
AllergiesAsthmaGreen_header
Cystic Fibrosis symptoms: Asthma, Allergies & Green FAQ
1.1k November 22, 2015
subimage_bottom
Join the Community
326 November 21, 2015
takemedicine
Ten Hurdles to Cystic Fibrosis Patient Adherence
3.9k November 21, 2015
imgres
Personal Spirometry and the Cystic Fibrosis Patient
818 November 21, 2015
gene-mutations-in-CF
Cystic Fibrosis genetics: Know Your CF Mutations
4.3k November 21, 2015
EnzymeFAQ
Enzyme FAQs
139 November 20, 2015
mountain-climbing
CF Patient To Climb the UK’s Three Highest Mountains in 24 Hours
1.3k September 24, 2015
3-150915034ZJX-lp
New cystic fibrosis drug has high potential, high cost
234 September 23, 2015
lauren_brenneman-702x375
Lauren Brenneman – Hartford Hospital cystic fibrosis case study
1.8k May 19, 2014
24h4 (468x312)
CF Innovators: Blown Away
3.9k
shutterstock_156419843-770x470
Concert Pharma’s Modified Version of Cystic Fibrosis Therapy Ivacaftor Outperforms Kalydeco in Early Testing
3.4k May 19, 2014
0 November 30, -0001
© 2017. Medrise. All Rights Reserved.