There is nothing worse than a summer cold. I should know. I am the proud owner of a bonafide summer cold complete with a runny nose, sore throat, coughing fits,…
Welcome Back to Editor's Choice! The end of the week is finally here, and we have some reading material for you. First, we have an awesome story of a CF…
Edgar Allan Poe’s idea of perfect beauty is frequently associated with living life to its fullest in a short period of time and dying young. Lenore, from his most famous…
Mermaids have unique breathing concerns while they’re on land. In Disney’s “The Little Mermaid,” a young mermaid princess trades her voice for an opportunity to live on the land and…
When you think of an inspiring athlete, who comes to mind? Jesse Owens, who went to the 1936 Olympics held in Nazi-controlled Germany and proceeded to win four gold medals…
The phrase “take advantage” is a bit strange. It can be quite innocuous with regards to using something. For example, there is nothing too bad about saying, “I’m going to…
Earlier this month, Vertex Pharmaceuticals released big news regarding a new development in cystic fibrosis treatment. The pharmaceutical company announced that their new, innovative technique in treating the disease had…
Happy Friday! How's the the sweltering heat treating you all (if you're on the east coast of the US, that is)? Hoping you are keeping cool! In the meantime, check out…
Regular readers of Patient Worthy know the cost of drugs is a huge barrier to treatment for many patients and families. Additionally, the fewer people diagnosed with a condition, the…
3:15 a.m.? Are you kidding? Why am I awake and staring at a digital clock that says it’s 3:15 a.m.? Ever have a night like that? The more you get…
When you’re a preteen, fitting in (or at least, not standing out) can be a big part of life. Sometimes, you’re just trying to get along with schoolmates, teachers, and…
Happy Independence Day Weekend Everyone! We have the latest update on the UK cystic fibrosis fight for Orkambi. We also have a great contribution on the importance of taking care…
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…
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