Cystic Fibrosis Raremark

Page no longer active.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

[Cystic Fibrosis Raremark @Raremark_CF]

Follow @RaremarkHealth to keep seeing our posts!
Thank you for following us! We're going to be closing down this page but don't worry, just follow @RaremarkHealth for continued news, updates and more - across a range of rare diseases - including #CF!

[Cystic Fibrosis Raremark @Raremark_CF]

Follow our new page @RaremarkHealth today!
This page is no longer making any active posts, but please hop over to @RaremarkHealth for continued rare disease news, updates - including posts on #CF!
#CysticFibrosis

[Cystic Fibrosis Raremark @Raremark_CF]

Have you followed @RaremarkHealth yet?
This page will no longer making any active posts so follow @RaremarkHealth for continued rare disease news, updates and more - including posts on #CF!
#CysticFIbrosis

[Cystic Fibrosis Raremark @Raremark_CF]

Be an everyday advocate for #CF. There are many ways you can be a advocate - from talking to people to sharing posts on social media.
#CysticFibrosis #CFWarrior

[Cystic Fibrosis Raremark @Raremark_CF]

What is a cystic fibrosis flare-up and what causes it?
A #CysticFibrosis flare-up is a pulmonary exacerbation, when your breathing and C#F symptoms suddenly get worse. Learn why it happens and what to watch for. https://t.co/PcPJHuvvvu

[Cystic Fibrosis Raremark @Raremark_CF]

Knowing your CF mutation: Knowing your mutations is important because it affects which treatments will work for you and which won’t.
#CF #CysticFibrosis https://t.co/dHXRCNG02a

[Cystic Fibrosis Raremark @Raremark_CF]

Dr. Julian Seifter, author of After the Diagnosis says: “You are not your illness. You have an individual story to tell. You have a name, a history, a personality. Staying yourself is part of the battle.” #CF

[Cystic Fibrosis Raremark @Raremark_CF]

Be an everyday advocate for #CF. From talking to people about a rare condition, to sharing posts on Facebook, to just making time for someone in need, there are many ways that someone can be an everyday advocate in rare disease.
#CysticFibrosis #CFWarrior

[Cystic Fibrosis Raremark @Raremark_CF]

Knowing your CF mutation: Knowing your mutations is important because it affects which treatments will work for you and which won’t.
#CF #CysticFibrosis https://t.co/dHXRCNG02a

[Cystic Fibrosis Raremark @Raremark_CF]

Listen to Oli and Nancy talk about their experiences with cystic fibrosis on our podcast.
#CF #CysticFibrosis #CFWarrior https://t.co/hQb3KvqnrV

[Cystic Fibrosis Raremark @Raremark_CF]

A dietary app used for six months to track food choices and manage pancreatic enzyme replacement therapy (PERT) helped children with cystic fibrosis (CF) to better meet disease-specific nutritional guidelines, a study shows. #CysticFibrosis https://t.co/YFMWOJOl6f

[Cystic Fibrosis Raremark @Raremark_CF]

What is CRISPR? And how does it work?
CRISPR is a powerful gene editing tool that can make changes to the DNA of any living thing. But even if it cures some rare diseases in the future, there are still ethical questions. Learn more here.
#CF #CRISPR https://t.co/NxbEEQS7IB

[Cystic Fibrosis Raremark @Raremark_CF]

Think of life as a novel. Disease can come in and mess up the plot, but in the end, we’re the authors of our own lives. There are chapters still to be written.
#CF #CysticFibrosis #CFWarrior https://t.co/POeu7GdWnE

[Cystic Fibrosis Raremark @Raremark_CF]

Knowing your CF mutation: Knowing your mutations is important because it affects which treatments will work for you and which won’t.
#CF #CysticFibrosis https://t.co/dHXRCNG02a

[Cystic Fibrosis Raremark @Raremark_CF]

Knowing your CF mutation: Knowing your mutations is important because it affects which treatments will work for you and which won’t.
#CF #CysticFibrosis https://t.co/dHXRCNG02a

[Cystic Fibrosis Raremark @Raremark_CF]

We’re Raremark, and we’re building an online platform for rare disease patients & caregivers. To make sure it’s useful, we’re running a survey to find out what content patients & caregivers would like to see on our site. Let us know today! #CysticFibrosis https://t.co/GhlfatAt3c

[Cystic Fibrosis Raremark @Raremark_CF]

What is gene therapy?
Around 80% of rare diseases have a genetic link. Many of these diseases don’t have any good treatment options, but gene therapy might help. So what is gene therapy, and how does it work?
#CF https://t.co/kCTchS3Pcv

[Cystic Fibrosis Raremark @Raremark_CF]

Do you use anything to track your health?
Digitally or not. E.g. apple watch or diary.
#CF #CysticFibrosis #CFWarrior

[Cystic Fibrosis Raremark @Raremark_CF]

Planning ahead with a chronic condition
Learn as much as you can about your illness. Find out about common symptoms and if or how your disease might get worse. Then share that information with your support team, so you can prepare together.
#CysticFibrosis https://t.co/EAb4ltj75T

[Cystic Fibrosis Raremark @Raremark_CF]

What does 'patient voice' mean to you?
#CysticFibrosis #CF