Cystic Fibrosis Raremark

@Raremark_CF

Our vision is a future in which all rare diseases are treated. A community to help you understand, manage and talk about

raremark.com/cystic-fibrosis
Vrijeme pridruživanja: kolovoz 2018.
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  1. prije 4 sata

    What cystic fibrosis symptoms can I learn to self-manage?

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  2. 4. velj

    How to help the healthy siblings of your ill child: Does your seriously ill child have healthy brothers and sisters? These well children may need your help too - we’re revisiting this topic because it's

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  3. proslijedio/la je Tweet
    2. velj

    “3. Prioritize. I have a rule that I only put three things on my to-do list a day, since being too busy can surprisingly un-motivate you and cause you to shut down. Realistic prioritization is key.” -Jessika Biele, an adult with

    5 proslijeđenih tweetova 22 korisnika označavaju da im se sviđa
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  4. 3. velj

    What five words would you use to describe life with CF?

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  5. 2. velj

    Approaches like yoga, along with medication are, key to managing CF pain, experts say

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  6. 1. velj

    “The likely truth is that you know one of the 1 in 20 people affected by a rare disease.” 28 days to go!

    2 proslijeđena tweeta 1 korisnik označava da mu se sviđa
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  7. 31. sij

    Which cystic fibrosis symptoms need medical help right away?

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  8. 30. sij

    CF Foundation awards £700,000 to support work screening for potential B. Cepacia infections

    2 proslijeđena tweeta 6 korisnika označava da im se sviđa
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  9. 29. sij

    Are there other conditions with symptoms like CF?

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  10. 28. sij

    How do doctors diagnose cystic fibrosis (CF)? Thanks to advances in medicine, doctors can now diagnose cystic fibrosis (CF) when someone is young: often at birth, or even in the womb.

    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  11. 27. sij

    Which chore do you find the hardest because of your ?

    1 reply 2 korisnika označavaju da im se sviđa
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  12. 26. sij

    New CF treatment Trikafta now available through AllianceRx Walgreens Prime

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  13. 25. sij

    Don’t overlook importance of sleep hygiene, experts advise

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  14. 24. sij

    How can I communicate better with my healthcare providers? You may not always have doctors with great communication skills. We look at a few things you can do to improve communication with your doctors.

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  15. 23. sij

    What happens during a clinical trial: If you're curious about joining a clinical trial and you want to know more about what’s involved, here are some key points.

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  16. 22. sij

    Is there a cure for cystic fibrosis?

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  17. 21. sij

    New hotline for caregivers: Depression. Exhaustion. Burnout. Stress. Those are just some of the words people use to describe their experiences as a caregiver. is trying to provide help with new hotline

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  18. proslijedio/la je Tweet
    19. sij

    Regular care visits are important for maintaining your health. Help protect yourself and others from catching and spreading germs while at your care center or in the hospital.

    6 proslijeđenih tweetova 26 korisnika označava da im se sviđa
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  19. 20. sij

    How does your cystic fibrosis affect your ability to work?

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  20. 19. sij

    Trikafta will be ‘life-transforming,’ especially for younger CF patients, researchers say

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