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We are closing in on 200 for our latest survey~ $50.00 for the 200th participant! Survey #3https://www.surveymonkey.com/r/NR9PRDY We are beginning the PILOT for Blockchain! PATIENTS OWNING THEIR DATA AND BEING PAID FOR IT (IF THEY SO WISH TO SHARE IT! Salt and Light, Imogene

We are IN! Beginning our process of forming a PILOT. Coming Soon! You may learn more by listening to Don Tapscott https://www.youtube.com/watch?v=Pl8OlkkwRpc

Hi Ali, Welcome to our community! I have reached out to Christine Noke the head of the https://www.linkedin.com/in/christinenoke/ the Middle East CF society. I think others will be able to help you from this community. We have at least 32 members from Pakistan! Good luck with the healthcare...

From PharmaPhorum

Watch this space for more about Patients owning their data and getting paid for it! Read more at the Global Forum DIA Global Forum Salt and Light, Imogene

Thanks All! Survey #3https://www.surveymonkey.com/r/NR9PRDY now has 179 participants. The 175th participant is from Vermont. The 200th participant will also receive a $25.00 Gift Card. We will close the survey at 200! And let you know the results! Salt and Light, Imogene

https://pharmaphorum.com/news/patients-call-for-end-to-two-year-row-over-cf-drug-funding/?utm_source=pharmaphorum+Daily+Newsletter+%28updated+at+17082017%29&utm_campaign=5a7853b85d-EMAIL_CAMPAIGN_2018_03_14_COPY_68&utm_medium=email&utm_term=0_a54496134b-5a7853b85d-431716241

Survey #3https://www.surveymonkey.com/r/NR9PRDY has 100 participants! 25.00 gift cards to participant 125 and 150! Participant 100 is from Ohio and received a gift card. lots happening behind the scenes. Other rare diseases are following our lead...with surveys to hear the voices of the...

Hi All! Our Survey#3mHealth Attitudes is up to 85 participants! Participant #75 received a gift card. A patient from Minnesota. The 100th and 125th participant will receive $25.00 gift cards! We are still interviewing App companies...but we have narrowed it down and we have a second interview...

Survey#2 Mobile App Features is CLOSED! We had 200 Participants! Thank YOU all who took the survey! Participant 200 is a Caregiver from the USA. This dad is concerned because his child has very rare mutations and there are no studies for them at this time! Survey#3 mHealth Attitudes is now...

Hi Luna thanks for responding, but we are just beginning our work to create a customized app for cystic fibrosis. Nothing is available yet. what is the name of the app to which you are referring? salt and light, imogene

We continue with a new Questionnaire. This one is to dig deeper into finding out what our community thinks is valuable in a new app! So far, 118 people have taken it. (It was sent out originally to all those who took the first survey.) Participant #25 and #50 each received a $25.00 gift card...

This survey is only available to primary Caregivers of children with Cystic Fibrosis aged 12-24 months old and eligible for the medication “Kalydeco” (Ivacaftor). Caregivers of children with Cystic Fibrosis aged 2-5 years, currently taking “Kalydeco” (Ivacaftor). These will be conducted as...

We ended the survey at 1212 Participants! Wow, you came through with loud voices. We found that data privacy, security and monetization are significant issues. I would want to know if the app company sells my data 68% (Patients) 78% (Care Givers) I would stop using the app is my...

I am back from the conference! It went very well and I have a few blogs to tell the story! Our survey is almost to the 1200th participant. I met leaders from Rare Disease Communities in South Africa, Russia, Finland, Iceland, Brazil, Canada, Malaysia and more. I really did NOT know how...

I am in Maryland at the Gaylord hotel and the world Orphan Drug Congress. Actually, I am staying at my first Airbnb. So much less expensive and lovely! I will be speaking tomorrow. I have meetings today. We now have 1189 participants! The 1200th participant will receive a $50 gift card...

We are at 1186! Very close to the close of this amazing survey! I am bringing all of you to Maryland this week to the World Orphan Disease Drug Conference. I will tell them 3 things: 1. Introduce the Community (the survey tells a LOT) 2. Introduce the Unmet Need (this community needs a...

is a simple good read! https://medium.com/s/welcome-to-blockchain/what-could-blockchain-do-for-healthcare-59c17245448e This community is brilliant and responsible! It may be a great first model... Going there... Salt and Light, Imogene

The 1175th participant was from Utah! We are ending the survey at 1200...so the 1200th participant will receive a $50.00 gift certificate. Then I am off to the World Rare Disease Drug Congress in Maryland. I will be speaking on Friday April 27th at 2:40 pm edt. I will share my presentation...

Getting ready to speak at the Gobal World Orphan Drug Congress in Maryland next week.http://www.terrapinn.com/conference/world-orphan-drug-congress-usa/index.stm I am excited to bring the results of our survey! 1163 participants so far! The main slides are the data directly from the...