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I placed this question regarding a possible Kalydeco induced rash a week ago on the Gene Therapy Talk forum but I thought I would try reposting here where I can reach out to a larger group of participants. I am hoping to find someone who has either experienced a rash while taking Kalydeco...

From Bryan on August 26, 2016 Okay, definitely need input from others with CF on this one. Since I was diagnosed in March of this year, everyone I know has given me “advice” on treatments. Apparently Cannabis Oil can relieve chest tightness and magically make my mucus plugs go away. (I...

Does anyone have the Pari Velox neb system? I heard about it a few months ago, but not sure if it’s available in the U.S. or if anyone has used it. It uses small particles for nebulizing (similar to the Pari eFlow or Altera). I am very interested in getting one, but I haven’t been able to...

In March our 10 year old son had a positive AFB for mycobacterium avium. This culture came back smear positive and because of this being the first time mycobacterium had ever showed up in a culture for him and it was in such high quantity in the smear, our Doctor thought for sure it would...

Thanks for your patience as we combine our data and restore our forums! This have been a lot of work by Ennio and Jim and Daniel too! Thanks to all and we will be back up and running soon. Looking forward to serving you all again at full capacity! Salt and Light, Imogene

Welcome home to our old forums! Thanks Ennio! Amazing job Salt and Light, imogene

Hi My Friends, Our upgraded site is being launched within the next hours! Know that some of the most current threads are being archived and will be available soon. Feel free to repost a question. I am very excited for this upgrade to our very important conversations! Please have patience...

http://news.mit.edu/2015/stretchable-hydrogel-electronics-1207

We are getting ready to launch our new site...which the HOLs agree is wonderful! At cysticfibrosis.com we have been CF Awareness for 20 years from the patients up! Through our CFTechnology.org 501 C 3 we can give away technology and we are always about education! We have been approached from...

We have been working hard behind the scenes creating our NEW WEBSITE! Every few years, we bring everything to new software. It is an amazing journey! 2016 is our 20th YEAR~ Here are some stats you may find surprising! Registered Users: 17,584 Forums: 28 Topics: 150, 231 Replies...

Hi my friends! As I was reading through the threads this morning (my initial activity for the last 20 years!) I came across CFinTX question and I thought this would be a good time to reply to his question about the Pertze email sent out so here goes: Great Question...

http://www.ivsolutions.com/2015/09/cystic-fibrosis-house-cleaning-tips/

I will be there representing all of us! We are being sponsored by Healthcare at Home a company from the UK. I met Natalie Douglas in April at an eyeforpharma conference in Philadelphia. She is a Board member of www.globalgenes.org. She is impressed with our community, and the work we are...

only in New Hampshire! It is a beginning...for patient self management! http://www.xconomy.com/san-diego/2015/09/02/topol-calls-on-healthcare-industry-to-emancipate-patient-data/ I love Eric Topol...Hope I can meet him someday soon! Salt and Light, jeanne

The dad was lamenting that his young son had lost 40 points PFT in between office visits.. I think it was about two years ago. Thanks for any one who can help me find the thread. Salt and Light, Jeanne

Sitting in my new office...I had to share the beautiful photos and note from BeautifulSoul... they fill my soul! The tree outside my window is my FIG TREE..and it is blossoming...shhh I don't want the deer to know....they have eaten all our tomatoes and flowers! Thank you Amber! Salt and light...

http://www.cysticfibrosisnews.com/ivacaftor-real-world-results-2/?utm_source=All&utm_campaign=CF-July+28%2C+2015&utm_medium=email

Dear all, Heads up that I feature (filmed on the London Eye discussing my battle with CF and daily mind-set to appreciating life) in a BBC Wales documentary ‘Before I kick the bucket’ as a young lady with cancer, Rowena Kincaid, looks into whether she will write her own 'bucket list'...

Darren Schuster His family asked us to remember Darren. They remembered him with a gift to CFTechnology.org and we are grateful for Darren's life and for the gift which will be used for our community and technology. Thank you, Jeanne Barnett

​http://www.healthdatamanagement.com/news/Physicians-Increasingly-Open-to-Video-Consultations-50841-1.html?utm_campaign=accountable_care_final-jul%207%202015&utm_medium=email&utm_source=newsletter&ET=healthdatamanagement%3Ae4706820%3A3656117a%3A&st=email