When Every Day is a Fight to Breathe
Date of issue: October 19, 2017 Boxing legend Michael Carruth was today firmly in Cystic Fibrosis Ireland's corner at Dublin's Irish Film Institute for the launch of a new awareness…
Date of issue: October 19, 2017 Boxing legend Michael Carruth was today firmly in Cystic Fibrosis Ireland's corner at Dublin's Irish Film Institute for the launch of a new awareness…
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…
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…
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…
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…
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…
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…
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…
Press release - 10th July 2016 PW Partner: Breathe With Me, Strawfie Challenge When Danielle Cartwright filmed her daughter Talia May taking her medication and proudly posted the video online,…
As featured in this Strawfie Challenge press release last week, two Ohio twins Aleeya and Alani are seeking to spread awareness of cystic fibrosis and the harsh realities of living…
Press release: 2nd June 2016 Xenia twins urge local community to take the Strawfie Challenge for cystic fibrosis awareness When Heather Scott and Nathan Young received the diagnosis that their daughter Adriana…
Patient Worthy's UK Partner Breath With Me Strawfie Challenge, wants you to know the basics about cystic fibrosis (CF) and how it affects patients and their families. So they made a rockin'…
Press release: 24th May 2016 Breathe With Me Strawfie Challenge The Team GB Trampoline Squad are the latest in a fast-growing line of sporting stars and celebrities to back the ‘Breathe…
Happy Friday Patient Worthians! We hope your Mother's Day was as awesome as ours. This week we have some awesome posts from our rare moms (#RareMom), those who fight their own…