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…
Orkambi (ivacaftor / lumacaftor) ist die zweite Präzisionsmedizin, die für den Einsatz in Großbritannien von Menschen mit zystischer Fibrose zugelassen wird. Der Fang? Es wird derzeit nicht von der National…
Orkambi (ivacaftor / lumacaftor) es la segunda medicina de precisión con licencia para uso en el Reino Unido por personas con fibrosis quística. ¿La captura? Actualmente no es proporcionado por…
Orkambi (ivacaftor / lumacaftor) è la seconda medicina di precisione da licenza per uso nel Regno Unito da persone con fibrosi cistica. La presa? Non è attualmente fornito dal Servizio…
Orkambi (ivacaftor / lumacaftor) est le second médicament de précision à être autorisé à être utilisé au Royaume-Uni par des personnes atteintes de fibrose kystique. La prise? Il n'est actuellement…
Happy Father's Day Weekend Patient Worthians! This week we have an amazing essay written by CMT Warrior Sarah Magno regarding her personal experience overcoming rare disease obstacles. We also have some…
Orkambi (ivacaftor/lumacaftor) is the second precision medicine to be licensed for use in the UK by people with cystic fibrosis. The catch? It is not currently provided by the National…
As a registered nurse, I have taken care of a fair share of the senior population. I have heard some great stories and also some funny quotes. Several older individuals…
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…
Una de las (muchas) cosas que hace que la fibrosis quística (FQ) sea tan difícil de tratar es que hay muchas mutaciones de la enfermedad, algunas afectando a subconjuntos muy…
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…
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