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Page no longer active. Follow @RaremarkHealth for #CF Our vision is to shape a world where all rare conditions are understood and treated. #RareDisease

Joined August 2018
Cystic Fibrosis Raremark retweeted
On the waiting list for a lung transplant? @lungstory_short, an adult living with #cysticfibrosis, shares how she handled two dry runs leading up to her double-lung transplant. on.cff.org/39nLXQ1
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Cystic Fibrosis Raremark retweeted
Following a three year break from high school as a result of her #cysticfibrosis, @abbychansen shares why she decided to go back for her GED and go to college. on.cff.org/3q68KpB
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Cystic Fibrosis Raremark retweeted
Genetic therapies have the potential to be able to treat everyone with #cysticfibrosis – but do you know how they work?! Read our explainer on genetic therapies to delve into the detail and find out: bit.ly/2VvyRIF
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Cystic Fibrosis Raremark retweeted
Katy who was diagnosed with #cysticfibrosis at seven weeks old, marks 2 years since her lifesaving double lung transplant this month. Katy says, 'I have to pinch myself every day that I'm still here'. Katy shares her story with us ❤ facebook.com/308381019644605…
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Cystic Fibrosis Raremark retweeted
"Having been diagnosed with cystic fibrosis as a baby, I grew up thinking I had an early expiration date. Once I started taking Kalydeco, my health completely changed for the better." -Sarah Boylan, an adult with #cysticfibrosis on.cff.org/2JX7STJ
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Cystic Fibrosis Raremark retweeted
Thank you! We’re thrilled to accept the @PRCA_UK award on behalf of the #cysticfibrosis community #PRCANatAwards. But our fight isn’t over and we won’t give up until everyone with CF has access to life-saving treatments. teapaw.org/PRCA_UK/status/1326245…
A wonderful achievement by @cftrust for winning the ‘Health and Wellbeing Award – In-House’ for ‘Lifesaving Drugs Now’. Some seriously good work in this area this year. #PRCANatAwards
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Cystic Fibrosis Raremark retweeted
Learning that your loved one has been diagnosed with #cysticfibrosis can come with a lot of emotions. @SuBailey, president of the @AmerMedicalAssn, opens up about her grandson's CF diagnosis and shares a special message to the CF community.
Cystic Fibrosis Raremark retweeted
“I ROSE UP to honor people with cystic fibrosis, and those that now breathe easy, who are responsible for bringing a highly effective treatment that benefits my nephew. I am proud to be with them as we continue to work to make CF stand for Cure Found.” -@AuntieMoMoore #ROSEUPCF
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Cystic Fibrosis Raremark retweeted
Meet Lucy Allen, our Director of Research! She's joing Ride for Research challenge, taking on a 400-mile virtual tour of our Strategic Research Centres across the country. Where will your miles take you on your Ride for Research challenge? bit.ly/3d3h6s9
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Cystic Fibrosis Raremark retweeted
Today’s recommendations to license #Symkevi for children aged 6 to 11 and #Kalydeco for babies aged 4 months to 6 months are a significant step forward in CF care. Read our news story here: bit.ly/32EKmlh
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Cystic Fibrosis Raremark retweeted
#Cysticfibrosis affects every individual with the disease and their family differently. Chad Lucci, and adult with CF, opens up about how CF's emotional effects reach far beyond the person living with the disease. on.cff.org/3mEUORx
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Cystic Fibrosis Raremark retweeted
Vertex announced positive Phase 3 clinical trial data for Trikafta in children 6 - 11 years old with #cysticfibrosis. Based on the results, Vertex plans to submit a supplemental New Drug Application to the @US_FDA in the fourth quarter of 2020. #CFresearch on.cff.org/339iTqI
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Cystic Fibrosis Raremark retweeted
Vertex have applied to the EMA to extend its license for Kaftrio: ow.ly/X5U450BpULs If approved, people with one copy of F508del and any other CFTR mutation will be eligible - giving thousands of extra people from across Europe access.
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Cystic Fibrosis Raremark retweeted
The EMA license has been granted for the triple combination therapy #Kaftrio, known as #Trikafta in the US. More details to follow.
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Cystic Fibrosis Raremark retweeted
Wales has announced a deal for access to the life-saving drug #Kaftrio, called #Trikafta in the US, on the day it receives its European licence. Read our news story here: cysticfibrosis.org.uk/news/w… #cysticfibrosis
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Cystic Fibrosis Raremark retweeted
Registration is open! Join us VIRTUALLY this year for the 13th Annual Champ's Challenge for Cystic Fibrosis. Run, Walk or Ride for a GREAT cause, helping people with #cysticfibrosis to live STROnger and LOnger #STROLO Sign up today at champschallenge.org
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Cystic Fibrosis Raremark retweeted
We know that #anxiety around the uncertainties of daily life right now are high. Dr Anna McCulloch, a #cysticfibrosis clinical psychologist, shared with us some helpful tips on how to deal with uncertainty and some helpful coping strategies.
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Cystic Fibrosis Raremark retweeted
Finally out! The first single cell transcriptional profile of sputum obtained from #CysticFibrosis patients reveals novel & distinct archetypes of mononuclear phagocytes & neutrophils. Kudos Dr. Britto and team! #ItIsPossible #scRNAseq atsjournals.org/doi/10.1164/…
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