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…
What comes to mind when you hear "palliative care?" Most people might think it only helps someone with end-of-life care. But did you know that palliative care can actually lift spirits…
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…
How long can you live without your heart? How long without your liver? Your spleen? Your lungs? A woman in Canada learned the answer to that last one. Melissa needed…
You want to know what one of the important things a parent or caregiver for someone living with cystic fibrosis (CF) can do? It’s accept responsibility for managing the patient’s…
Loneliness and lack of social support can make a person feel overwhelmed, so I felt hopeful when I came across this cystic fibrosis (CF) website for kids. Children living with…
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…
CysticLife.org, una sitio de web para la comunidad de la fibrosis quística (FQ), se está embarcando en un esfuerzo histórico de la recaudación de fondos para apoyar la investigación dirigida…
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…
New therapies have increased the likelihood of a longer life with cystic fibrosis (CF). A few decades ago, it was not common for children diagnosed with CF to live past…
When I was 15 and received my learner's permit, they asked if I'd like to be an organ donor. I was a little freaked out at the image of getting…
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…
Update: In June of 2016, we had the pleasure of interviewing Aleeya Young, an amazing teen with CF. Well, this Sunday she will be receiving a $10,000 2016- 2017 Sacks for CF…
Most people think of children when they hear cystic fibrosis. Thankfully with new treatments and new therapies people are living much longer. This gentleman, named Gary Anderson, is a perfect example.…
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…
Comprensión de la fibrosis quística (FQ) ha, afortunadamente, recorrido un largo camino desde sus primeras descripciones de niños que son "Embrujada" o "hechizado", porque su sudor sabor de la sal.…
Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers have identified a superbug that…
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