cystic fibrosis Archives |

“In Claire fashion”: Claire Wineland + organ donation with a health condition

Claire Wineland — an author, inspirational speaker and social media star with cystic fibrosis — died last month at age 21 following a lung transplant. “In Claire fashion, she is an organ donor,” her family shared, noting that her kidneys helped save two people. Learn more about Claire and organ donation with a health condition. […]

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Four actions = cystic fibrosis awareness

Patient Experiences / By patientslikeme

You guessed it! Along with mental health, anxiety and depression, Huntington’s disease and fibromyalgia… May is also Cystic Fibrosis (CF) Awareness Month. Here are some quick facts about CF from the Cystic Fibrosis Foundation (CFF): CF is a genetic condition that primarily affects the lungs and digestive system. CF causes unusually thick, sticky mucus that

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“Shine a spotlight” and raise awareness for Cystic Fibrosis

Patient Experiences / By patientslikeme

May is Cystic Fibrosis (CF) Awareness Month and the Cystic Fibrosis Foundation (CFF) is working to “shine a spotlight on what CF is and the progress being made toward a cure.” The CFF has a terrific awareness page where you can find info on ways to get involved, like: Walk in Great Strides, “Take Action”

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Recognizing the Rare Disease Community’s Champions of Hope

2 Comments / Patient Experiences, Rare Diseases, Research / By patientslikeme

Did you know that 1 in 10 people worldwide have rare and genetic conditions? PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect

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Life with Cystic Fibrosis: Three Teenagers’ Perspectives

4 Comments / Patient Experiences / By patientslikeme

Unlike most of the health conditions we cover at PatientsLikeMe, cystic fibrosis is one of the few communities where the majority of our members are under the age of 29. In fact, approximately 60% of our 440 cystic fibrosis patients report that they either fall in the 0-19 or 20-29 age brackets. What exactly is

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