LHL Lungefibrose 🫁

LHL Interessegruppe for Progressiv Lungefibrose (PPF). The Norwegian Heart and Lung Association’s patient interest group for Progressive Pulmonary Fibrosis

[Liam Galvin @IPFthurles]

Great to hear from the patients at #ICLAF2024 with @EU_IPFF's @John_solheim and Steve Jones @ActionPFsteve speaking amid the contributions of the many members of our Scientific Advisory Board #CurePF

[LHL Lungefibrose 🫁 @LHL_ipf]

Vi gratulerer @Boehringer med at overordnede data fra fase III IPF-studien FIBRONEER viser at studiens primære endepunkt er oppnådd. Vi gleder oss til å lære mer om effektivitet og sikkerhetsdata og heier på alle aktiviteter som kan gi pasientene tilgang til bedre behandling.

[Boehringer Ingelheim @Boehringer]

#NEWS: We’re excited to announce that our Phase III trial in people living with idiopathic pulmonary fibrosis (IPF) met its primary endpoint. 

Learn more here: https://t.co/KmlQf4lvyM

[LHL Lungefibrose 🫁 @LHL_ipf]

"Mangelen på spesifikke behandlingsmuligheter og håndtering av hoste hos disse pasientene er fortsatt et betydelig udekket klinisk og pasientrettet behov".

[Sir Cough alot @John_solheim]

I am really looking forward to reading this. As my other alias Sir Cough-a-lot I can confirm that cough is a burdensome symptome.

[LHL Lungefibrose 🫁 @LHL_ipf]

LHL er tydelig tilstede under verdens største medisinske lungekonferanse #ERSCongress2024 i Wien. Pasientstemmen blir lyttet til og vi kan ta med mye kunnskap og erfaring hjem.

[LHL Lungefibrose 🫁 @LHL_ipf]

Thank you for highlighting an important area, occupation may matter more than previously believed

[Sara De Matteis, MD, MPH, PhD @SaraOccEpi]

Delighted to contribute to this important symposium on IPF #ERSCongress2024 @EuroRespSoc @ERS_Assembly6

[FSMR - RespiFIL 🫁 @RespiFIL]

🔴 J3 [#ERSCongress] : why is idiopathic pulmonary fibrosis #IPF is not so idiopathic ? Le Dr Gisli Jenkins @IPFdoc introduit ce symposium en nous parlant de la fibrose pulmonaire idiopathique #FPI.

[LHL Lungefibrose 🫁 @LHL_ipf]

Det er alltid hyggelig med så mange gode tilbakemeldinger. Både det å hente hjem impulser og kunnskap samt dele erfaringer er verdifullt.

[European Lung Foundation @EuropeanLung]

Earlier @EU_IPFF president @John_solheim shared his views in the session “Why is idiopathic pulmonary fibrosis not so idiopathic?”

As a member of our #pulmonaryfibrosis Patient Advisory Group (PAG), John is keen to advocate for others with lung conditions. #ERSCongress #PFMonth

[LHL Lungefibrose 🫁 @LHL_ipf]

I dag har LHL Lungefibrose markert seg på en av verdens største (lunge og luftveis) medisinske konferanser, med John Solheim i rollen som pasient og nyvalgt president i @EU_IPFF

[Liam Galvin @IPFthurles]

Full house for the "Why is Idiopathic Pulmonary Fibrosis not so Idiopathic" session at #ERSCongress - with two speakers from the @EU_IPFF Scientific Advisory Board plus @EU_IPFF president @John_solheim
#CurePF #PulmonaryFibrosis #PFMonth

[LHL Lungefibrose 🫁 @LHL_ipf]

@IPFthurles @EU_IPFF @EuropeanLung @ers_ild @ILFA_Ireland @ErnLung Same to you Liam, I am already well on my way and soon at the airport

[EU-PFF @EU_IPFF]

Pulmonary Fibrosis Awareness Month 2024 #BreathingLife is here. Every September, we're raising awareness about #PulmonaryFibrosis. This #PFMonth, we focus on the challenges & burden it places on patients & loved ones, advocating for #OxygenAccess. #OxygenAccess #CurePF

[EU-PFF @EU_IPFF]

📅 Pulmonary Fibrosis Awareness Month 2024 is almost here! Starting this Sunday, follow our channels for vital #BreathingLife updates. We are advocating for more #OxygenAccess for #PF patients. Hear why oxygen is essential 🫁#CurePF

[Neve 🌷 @naturallyneve]

Italians are the SMARTEST people on earth.

Even with obesity rates growing, Italy is still one of the healthiest countries.

So how do they manage this?

Here's the 6 things I found Italian’s are doing, that American’s aren’t.

(🧵+ simple steps you can follow)

[EU-PFF @EU_IPFF]

Imagine not having access to what allows you to live fully. This Pulmonary Fibrosis Awareness Month in Sep, we explore a vital aspect of life and the challenges of those with #PF. Stay tuned for key #BreathingLife info & resources! #OxygenAccess #PFMonth #CurePF

[Pulmonary Fibrosis NI @PFNI_NIRELAND]

Meet Daniel he is 17, his Granny has Pulmonary Fibrosis. He will be swimming from N Ireland to Scotland to raise awareness about PF. A distance of 25 miles. Please send him your support ⁦@ActionPFcharity⁩ ⁦@GrampianPf⁩ ⁦@BoltonFibrosis⁩ ⁦@TamesideGroup⁩

[Bradley Price @BradleyJPrice]

Virtual wards will be key in the future of ILD care - key components of this as set out by @ParsonageMaria #BTSSummer2024

[Mike Baldwin @mikey3982]

Good article on pathways of #raredisease from @TheLancet https://t.co/pGEKhaZI9j multi layered and complex does it need new thinking from the complexity community - @snowden @TheCynefinCo #weaksignals HT @PilarRiveraOrt1 cc @jbuchanan_ox #diagnosticodyssey

[LHL Lungefibrose 🫁 @LHL_ipf]

Sjeldne diagnoser berører 300 millioner mennesker i verden. De fleste av dem starter sin reise i primærhelsetjenesten og ikke i spesialisthelsetjenesten. Viktig internasjonalt arbeid startet med tverrfaglig deltakelse.

[Sir Cough alot @John_solheim]

Start av viktig internasjonalt samarbeid om hvordan addressere (https://t.co/YEgcTkY1iw. diagnostisere og behandle} sjeldne diagnoser innenfor primærhelsetjenesten og ikke bare innen spesialisthelsetjenesten.

[LHL Lungefibrose 🫁 @LHL_ipf]

I Generalsekretærens tale til Landsmøtet 2024 sender @lhlorg 5 viktige saker til @helseministeren

- Fastlege for alle
- Rehabiliteringsreform
- Pakkeforløp for KOLS pasienter
- Flere hjertepoliklinikker
- Løse mangelen på  logopeder

[LHL Lungefibrose 🫁 @LHL_ipf]

Pårørende trenger å bli sett og ivaretatt. - Mari Larsen, fung. Generalsekretær i @LHLorg under Landsmøte 2024

[LHL Lungefibrose 🫁 @LHL_ipf]

Påtroppende generalsekretær i @LHLorg ble ønsket varmt velkommen av LHL Landsmøte 2024. Vi ser fram til at han starter ved årsskiftet.