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We are aiming for 1000 participants for our Survey! That is a lot of CFers and Caregivers. So far 350 have taken the survey. Thanks Everyone who took the survey...at 6:45 we now have 386 participants! 51% have CF 45% are Caregivers 83% are from the US 3% are from South Africa 2% from the UK...

https://www.healthcare.gov/

Beautiful...I love how surprising the emotions flow through. Let us know if your baptism will be live streamed!

Group A – patients who are Pulmozyme users (25-30 minute on line survey) $40.00 · Needed: 19 Teens ages 14-17 · Needed: 7 Ages 18-24 · Needed: 6 Ages 25-29 Group B – Needed: 8 Caregivers for 5-17 year-olds, Pulmozyme Users (25-30 minute on line survey) $40.00...

On-Line Survey 25-30 minutes: For those using Pulmozyme: we still need: 16 teens: Ages 14-17 Participate for research and a $40.00 Gift Card The Link is: http://survey.gazelleglobal.com/CF

In the US you own your medical records but depending on the state you live in, you may have to pay for copies... https://www.verywell.com/cost-of-getting-copies-of-your-medical-records-2615313 Same in Canada...

The current research is closed. I will hear more tomorrow! Thank you!

Wow! We are over 300 participants! If you are curious about how this app will work with you for research, discovery, and profit...then take our survey...and thanks and appreciation to the 305 who have taken it so far. $50.00 gift cards have been sent to participants in Connecticut, Illinois...

On-Line Survey 25-30 minutes: For those using Pulmozyme: we need: 20 adults ages 18-24 15 adults ages 25-29 Participate for research and a $40.00 Gift Card The Link is: http://survey.gazelleglobal.com/CF

220 people have participated! We have new participants from North Dakota, Portugal, Israel, and Mexico! A message came from a mom at the CFF conference with Tamika Grubbs RN: "Hey girl, this is Jenny. You are lucky I love you so much, because I just completed your survey and it took me 15...

211 people have taken the survey! 82% come from the USA. These states are represented: Alaska, Arizona, California, Colorado, Connecticut, Florida, Georgia, Idaho, Indiana, Illinois, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota...

Thanks to all who took the survey so far! 74 people have taken it. 63% have CF 32% are primary Care Givers Most people are from the United States with California, Pennsylvania, and Texas being the states most respresented. Members from Germany, Ireland, and Saudi Arabia have also weighed...

<a href="https://www.youtube.com/watch?v=VK8uTmZXT3Q" target="_blank"> This video was done by member: Lance2020 Beautiful! Well done!

Thanks everyone! So Far 70 Responses~ Goal: 1000!! We will publish the results...this is YOUR data~

http://cysticfibrosis.com/data-valuable-watch-video-take-survey/ This could lead to all patient data having monetary value...a new marketplace? Salt and Light, Imogene

http://edition.cnn.com/videos/politics/2017/09/26/republicans-delay-graham-cassidy-health-care-reform-full.cnn The Graham-Cassidy bill is dead...but we still need to maintain our vigilance as present day health care is being dismantled. Good Job for this time! Salt and Light,

From caregivers.com Visit https://lnkd.in/eVrMf-g to participate if you're a #RareCare giver.

Today there may be three Senators who will vote NO on this new bill which will kill it...but remember 50% of our community is covered under Medicaid. "It's not over till it's over" Yogi Berra Continue to contact your Senators. Salt and Light, Imogene

Many of you know, from my LinkedIn profile, that I am a founding member of the Aurora Project. Their main goal is patient centricity for pharmaceutical companies. This is the second year in a row, they are putting out a survey. I, as a founding member, help write the patient portion of the...

Tamika has joined us and for one I know she has a big meeting on Wednesday concerning the Medicare Waiver in Florida... I wish good luck to all our Florida members and I know Tamika is a great spokesperson! http://cysticfibrosis.com/tamika-grubbs-rn-help-cystic-fibrosis-community/ Salt and...