What does 'patient voice' mean to you? #CysticFibrosis #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 bit.ly/2W25uS6

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

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 bit.ly/3j1iSOS

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 bit.ly/2WLi6gc

Knowing your CF mutation: Knowing your mutations is important because it affects which treatments will work for you and which won’t. #CF #CysticFibrosis bit.ly/3ovVEkq

Knowing your CF mutation: Knowing your mutations is important because it affects which treatments will work for you and which won’t. #CF #CysticFibrosis bit.ly/3ovVEkq

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 bit.ly/3Dl23qf

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 bit.ly/38f1Gzb

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 bit.ly/3gkTDVV

Listen to Oli and Nancy talk about their experiences with cystic fibrosis on our podcast. #CF #CysticFibrosis #CFWarrior spoti.fi/3lhWX3L

Knowing your CF mutation: Knowing your mutations is important because it affects which treatments will work for you and which won’t. #CF #CysticFibrosis bit.ly/3ovVEkq

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

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

Knowing your CF mutation: Knowing your mutations is important because it affects which treatments will work for you and which won’t. #CF #CysticFibrosis bit.ly/3ovVEkq

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. bit.ly/3epgVYn

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

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

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