Cystic Fibrosis… For a mother, those words are disheartening, confusing, and so, so frightening. For a child, those words mean countless daily medications, extensive hospital visits, and a shortened life…
Christmas 2016 seems like a lifetime ago. In fact, I can't figure out if my hair grows twice as fast as it used to, or if time is passing at…
CFRI's third annual Embrace Retreat is happening May 5th - May 7th! The Embrace Retreat is specifically geared toward mothers of children and adults battling cystic fibrosis. Just in time…
Welcome back Patient Worthians! This week we have some exciting news for the MS community. Additionally, we have some great tips on how to build your CF dream team. Also,…
Vertex Pharmaceuticals announced that two phase 3 studies involving a combination of tezacaftor / ivacaftor improved the lung function in cystic fibrosis patients that are 12 and older, with the F508del…
Ay Canadá, la gente piensa que eres todo acerca de ser muy educado y su jarabe de arce riquísima, pero yo sé la verdad: Usted sabe cómo luchar y que…
We are back from Rare Disease Week in Washington, DC! And do we have some highlights for you below?! Rare Disease Day at NIH was not only informative, but encouraging.…
Last night, I attended a documentary screening of "Up For Air" in Washington, DC for Rare Disease Week (or #RareDC2017, #RareDiseaseDay). It follows 53-year-old Jerry Cahill over the course of…
Get informed and gear up for Rare Disease Week this Monday! Start with our Editor's Choice. This week we have a sweet story about a pup and how he helps…
Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…
As a Registered Nurse, I think the main thing that I do is educate people. It can be the actual patient, the caregiver, and/or the family. Nurses spend most of…
Before 10 years ago, 40-year-old Cystic Fibrosis Advocate Jillian McNulty generally had her cystic fibrosis in check… so much that coworkers at the radio station for whom she worked for…
Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…
Happy Friday Patient Worthians! What happens when big pharma combines forces? Also, what are you doing in March? We have a conference for you! What are the complications of having multiple…
There comes the time when families ask the question,"When should we have another baby?" After having one child, and knowing the responsibilities that you have to take on, it can…
Imagine sitting in a doctor's office and hearing your child be diagnosed with cystic fibrosis (CF), or another grave illness. In this paralyzing moment, whatever was consuming your life minutes before…
For those who watch the efforts to combat chronic diseases from the sidelines, it’s easy to see the war as one where humans are the underdogs facing a huge, formidable…
Gemma Daysh, a mum from Portsmouth, Hampshire was featured on BBC South Today on 3rd January, 2017 to highlight the fight faced by the cystic fibrosis community to gain access…
The word Love. What does that mean to you? Most people say: "Well holding hands, kissing, and spending lots of time together." Love is a strong word. I feel if you…
It is always so heartwarming to read a great story. Especially, when someone beats the odds and overcomes something tremendous. Nicole Kelly's parents did not think they would see their…
Press release: 23rd December 2016 Dozens of celebrities have thrown their weight behind a campaign for the cystic fibrosis community in both Ireland and UK to gain access to a new, ground-breaking…
Sometimes when a person has to fight the daily battles with chronic disease, some things just don't seem as important as others. Occasionally, patients with chronic disease are understandably focused…
I have been living with Cystic Fibrosis (CF) since birth. I was lucky that I was diagnosed early and started on medicine straight away. One in every 25 people carry the…
People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…
Press release: 12th October 2016 Abigail Brundrett, 16 and Cassidy Vancil, 18 from Charlotte, NC, have choreographed and performed a dance video [to help her lifelong friends]. [It] highlights the struggle faced by people…
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