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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

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

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...

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

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

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...

Some of you know I will be speaking tomorrow at the https://panagorapharma.com/mobiletech/speakers-2/ Today....I will meet many of the other speakers...This conference is about MOBILE Technology In our survey in 2015 83% of you said YES we want mobile to better care for ourselves. I bring...

https://www.cff.org/News/News-Archive/2017/Senate-Health-Care-Bill-Fails-to-Adequately-Protect-People-with-Cystic-Fibrosis/?utm_source=newsletter&utm_medium=email&utm_content=outlined%20the%20many%20ways&utm_campaign=Advocacy%20email%20062217

http://cysticfibrosis.com/make-friends-with-your-legislators/ The above link helps you find your senators. This just in from one of our members: The Senate bill is being written behind closed doors. There will be no public debates. No public forum. No bi-partisan approach. They are...

Many of us have read his book about his daughter Alex. https://www.amazon.com/Alex-Life-Child-Frank-Deford/dp/1558535527#reader_1558535527 If you haven't read it, it is highly recommended! And today we remember him as a great sportswriter and man...

We are looking for 30 caregivers of children 10 years old and younger in the USA who are willing to share their thoughts about the medication they use to treat their Cystic Fibrosis. v Phone Interviews will be taking place June 26th – June 30th. v All interviews last no longer than 55...

Read how you may qualify from the CFRoundtable newsetter! For instance, in 2007 it became law that when a drug company is registering a clinical trial on clinicaltrials.gov, they are required to specify whether there is an expanded access program (EAP) for the investigational drug available...

http://cysticfibrosis.com/thymosin-alpha1/ This is a blog with a study that may be very hopeful for our community. I have been trying to contact the authors (on LinkedIn) and there is controversy as with so many new drugs and studies for our community. Could this be true? Has it been studied...

PTC Therapeutics' ataluren fails late-stage study in patients with nonsense mutation cystic fibrosis Since we got the sad news that Ataluren failed in the late stage study...we have some good news: Indrepta, a nutritional supplement for non sense mutations, is now on the market! Jim Caldwell...

I am a founding member of this very interesting project where 2800 pharma marketers have joined in. The crux of the project is a Survey. I will help write the survey questions that will be going out to Pharma and to patients and caregivers...so you are not only invited to take the survey...

This will probably help so many who come here looking for a diagnosis...be sure and read this: http://cysticfibrosis.com/new-guidelines-cf-diagnosis/

After this busy weekend, in the US, we all have to feel empowered to define how we want our country to go forward in so many important areas. This community has to care about healthcare. You probably voted, but now let your legislators know exactly how important health care is to you and all...

Francis Collins will remain head of the NIH in the new presidential administration! Salt and Light, Jeanne