#ERN-LUNG
LightNews LightNews
cilialab.bsky.social
Wow ERN-LUNG PCD core team- what a perfect welcome to Napoli for the 2025 meeting! Room views don’t get much better… ready for a great meeting! Perfect place… #RareRespiratoryDiseases #PrimaryCiliaryDyskinesia #PCD #ciliopathies
April 6, 2025 at 1:34 PM
rarediseasectn.bsky.social
Thrilled to see a spotlight on our co-lead Dr Cormac McCarthy and the great work happening in ERN-Lung and
@svuh.bsky.social
ucd-chas.bsky.social UCD College of Health and Agricultural Science, Dublin, Ireland. @ucd-chas.bsky.social · Feb 27
On #RareDiseaseDay, we recognise the leadership of Dr Cormac McCarthy, whose voice continues to raise research impact & awareness of Lymphangioleiomyomatosis (LAM). . #clinicaltrials

Patient partnership drives progress.

@ucdmedicine.bsky.social @ucddublin.bsky.social
February 27, 2026 at 11:41 AM
rarediseasectn.bsky.social
On #RareDiseaseDay, we celebrated SVUH being named Europe’s top-performing centre for rare lung disease by ERN-LUNG! A Centre of Expertise, SVUH delivers excellence in patient care, research & innovation. Congrats to our co-lead, Prof Cormac McCarthy!

🔗 www.stvincents.ie/st...
St. Vincent’s University Hospital named Europe's top-performing Centre for Rare Lung Disease - St. Vincent's University Hospital
St. Vincent’s University Hospital (SVUH) has been awarded an Excellent rating in the prestigious ERN-LUNG Member Activity Performance Tool (LUNG-MAP) survey, solidifying its position as a leader in rare and complex lung disease care across Europe. As an expert centre for rare lung disease, SVUH has been recognised as one of the leading and highest-performing […]
www.stvincents.ie
March 5, 2025 at 9:23 AM
rarediseasectn.bsky.social
We’re pleased to see this work connected with the RDCTN through our Co-Lead, Prof Cormac McCarthy, whose work spans pulmonary fibrosis, rare lung disease, clinical trials and ERN-Lung, alongside research at @ucdconwayinstitute.bsky.social A great month for sharing where research is taking us next!
September 3, 2026 at 8:55 AM
europeanrespsoc.bsky.social
Registration is open for the ERS/ERN-Lung Virtual school on rare lung diseases!

This interactive course will present the latest understanding and advice on managing rare lung diseases. Bursaries are available until 21 September, 2026 🚨

Learn more: https://bit.ly/4yV2mFd
August 7, 2026 at 2:46 PM
europeanrespsoc.bsky.social
Joining us for this year’s #ERSCongress? Don’t miss the Wednesday special programme, including:

💡 ERN-LUNG: a patient-focused network

📆 9 September, 2026 | 09:00–11:00 CEST

📌 Room 3I

https://www.ersnet.org/congress-and-events/congress/wednesday-special-programme/
July 29, 2026 at 2:47 PM
horanilab.bsky.social
Looking forward to joining the ERN Lung meeting and discuss science and advanced in PCD with my European colleagues 😊
April 5, 2025 at 3:52 PM
rarediseasectn.bsky.social
We are delighted to welcome Dr. Vikas Reddy V to St. Vincent's University Hospital as the new ERN-LUNG Data Manager! With a background as a PharmD and an MSc in Healthcare Informatics, he brings a powerful combination of clinical insight and data expertise. @svuh.bsky.social
A man wearing a black suit and glasses, smiling at the camera
April 7, 2026 at 11:54 AM
rarediseasectn.bsky.social
#TuesdayTrivia

Did you know ERN Lung supports two registries for rare lung diseases? 🌬️

Ms Elisabeth Humbert-Dorfmüller showcased how the ERN Lung Registries & Academy empower rare lung research across Europe.

▶️ Watch her talk at our conference: www.youtube.com/watc...
ERN Lung Registries & Academy: E Humbert-Dorfmüller
Ms Elisabeth Humbert-Dorfmüller, ERN Lung
www.youtube.com
July 8, 2025 at 10:10 AM
rarediseasectn.bsky.social
🌬️ ERN Lung Registries & Academy 🌬️

During Session One: European Reference Network Registries, Ms Elisabeth Humbert-Dorfmüller (ERN Lung) will showcase the ERN Lung Registries & Academy, supporting #RareLung research.

📅 Sign up: www.eventbrite.ie/e/...
A slide with a photo of the speaker and the title of the talk
March 12, 2025 at 1:06 PM
europeanlung.bsky.social
💙 #RareDiseaseDay is 28 Feb!

The ERN‑Lung BREATHeREGISTRY collects patient experiences to improve research and care for rare lung diseases.

L️earn more: https://www.europeanlung.org/en/news-and-blog/ern-lung-breatheregistry-helping-to-improve-research-into-rare-lung-conditions/
February 26, 2026 at 8:00 AM
jardinjointaction.bsky.social
📅🌷 Day 14 of #JARDIN's Advent Calendar

✨ ERN-LUNG is the ERN for rare respiratory diseases. It brings together expert centres and patient organisations across Europe to reduce mortality, improve care, support research, and strengthen education and knowledge-sharing.

🔗 https://ern-lung.eu
December 14, 2025 at 12:02 PM
iamcharleneyoung.bsky.social
Ms Elisabeth Humbert-Dorfmüller presenting The ERN Lung Registries (one being patient-driven)

And The ERN Academy aimed at Healthcare Professionals which I thought is a great concept and great opportunity to learn from the best!
April 10, 2025 at 9:25 AM
epsteinweb.bsky.social
Parts 1-3/3 — EFTA01714681.jpg
#epsteinweb #efta01714681
https://epsteinweb.org
Available in the iOS app store now!
https://apps.apple.com/us/app/epstein-web/id6758880661
EFTA01714646 | EFTA01714681 Pogo A Page A Account name Account name Account number Account number Statement date 5.20O.4 Statement date Billing period October 21 - November 20.2034 Billing period 718 718 continued.. Telecommunications Services Call Detail Mani Da» Tim* Cell To M6 row 10 33333 m Number continued... Services Telecommunications See Footnote Lung 0lfitneld Min:See Um* Giber 8.00 2.00 .1.00 4.44 0.10 847 win II PP/P2 3.00 0.00 4.01 0.00 19/90 2.00 0.00 0.00 ewe 140 O.40 0.00 P0/10 1.00 C.00 0.0C 4.00 w PPP Mat. 99/912 IMO C.00 0.00 0.00 545 110o IX 051)2 PI e I/AU4 es,Le nr v rum ralin. PP/5Y 1.40 0.00 0.44 2.00 810 0,, II 05.30 M k PLM 2G.84 4.90 ISO 117, II 004)4 M I al Vow 19 PPP M+ en rva a. asinma PP/R) 000 0.01 0.34 00/132 Div 0.01 11.04 4011101 al 01.22 Cm M WM 0..02 Pain m1. rt PP/P2 1.00 0.00 0.04 est tie, 11 0019 PM »i man Km .9/.. 0.01 0.02 0.0* (.53 be 11 0140 PM II PM OOI" 0.00 0.04 040ven10403.11MwIIeNR1m,16 0.00 VIM 056 in VAIN ace . • 2.00 0.00 657 MP 11 05550 PK 1.10,01115 1.9/141 0.00 0.00 ISO6YNn1105.61MVeaMeb,04 ruM 151/42 1.04 0.44 0.00 Ili Win 1.00 0.00 *limn to 4444 CM el Pala ecn.n. 0.00 01/1.0 416 Moo 10 05.59 IV V IMM Mn 10 04:17 191 1•50•1•2 . 0.00 460 Vet 11 05.44 CM ZamailD3 amp Mire 10 34115 9.4 1/8130~.01 0.40 0.00 421411 III 1.50 I.» 2.40 0.01 4.00 0.0) :WM (WPC 001./4 0.00 4.00 0.0. moue Her le mu 2,00 1.1.0 0.00 imp 11 115.43 II4 V PIP ROLM 0.00 who •5140 2.00 1100 Ill PAIR 00.1.P4 1.50 PP/PC1 eerie «art Moll 01 V MM eR.ry DOI • rt. 04 1accoileg 015 Kew a 0.00 2•00 tr/e0 teit SW 10 114.32.191 M &al *ohm w Mx Total Charges MP: 1.00 Min 10 01511 PH 11 CMS 101.14 Outer 003 live 11 05.22 ni • run 1010 P9740 0i 1.15429i IDS Moo 11 01.15 PM V 09114 1101.1l. PP/i0 11/0 rag ali 115150 M 0.00 Long Distance/ iD Sot 012729I V PALM m1.11 COI WI If Call 'Male Soo TOL11 saw to 04.22 PI V MN wag rt. Pi not 10 0409 0.00 25.2004 October 21 - November 20, 2004 ?PM 0.00 0.40 0.40 0.00 0.00 ova. 0.00 0.00 0.110 100 0.00 0.00 0.10 0.00 Wei two 859 Mn 31 44.111 014 14 90184 Oq.R mom 8.00 0.00 019 Men 10 04.11 04 POI MGR 49.110 1.00 0.34 0.00 0.00 40 Inv I/ 05.53 WU Mtn MM. Pao 1.00 0.00 020 nag 10 90.11 Iv 9.142. . 119/110 40/11 0.00 0.08 0.00 001 ven 0541 IV M MIA Ka M. 14~ 090 0.00 0.01 0.00 ern. n. PP/10 4.00 0.00 n.w C.40 062 Maw 11 115.54 140 InconIn 24/40 2.90 0.00 0.01 0.00 (02 Pre 10 44444 111 lace" Pr/CM/02 1.05 0.01 0.44 4.00 11113 Mn 11 econ PI Inceelnci woe 1010 0.10 0.01 0.00 UV Inv 1.1 14.41 1.4 fuuly 11/01/N 1.4.1 0.00 0.01 0.00 501 Mn 11 04.e• 1•4 M Mi. PP/40 1100 4.00 0.00 053 Maw 11 04411 PM 1403..1.39 Inn> 1.00 4.04 WI Mn I/ 0021 lel 1~05 tone 1100 0.40 0.00 1Sr 11 0441 PI 14 PIN DPI ,rt. rho 1,04 4.04 0.00 04,44 PH lecann, Petro 3.44 0.4e 0.04 000 Mn 11 Kiss PC limenley n/n2 1199 0.00 1170 Mr 11 04.5/1 PI 1•P•Ing 541/50 IV° 0.40 Ill 91./.11 ZIP 9.40 PP/ 417 tog 9.40 PP/ 40 an 0.40 09/90 1,00 0.40 021 Pro 10 Da.19 It nix I/ e24 ten al 81.00 IM laptel PrIn 141 0.01 0.00 125 PP lI .01.10 l51 1“854.1 00/PO 143 0.01 0.00 Cie 1- 44444 /14 v WM Kt.. rt. lit/ru 7.04 0.01 0.00 0.00 le 127 NW II 01.59 114 Cr/PU 100 0.34 0.00 0.34 1568 /Iev II 71190 ion 0.01 0.00 970 Mow 11 03.51 PI Imicm103 nOrD 1.00 o.w 0.00 <2.0 Mn 11, 44.191 PM 708.002.1.15.p. n/911 1800 0.00 0.00 0.09 00.00 95124 1.0i .91 124 Inv 11 93.14 9.1 150•1015 CI Mn 11 114.01 Val .n. POP 11 1.1.13 PC leicamtsy 575 in 21 01.10 114 Inemism 0.00 0.40 0.00 1.00 O.00 9.00 032 NW 11 0040 IV I P.M7I 031. IL 79/9.1 1.05 0.00 0.00 en Ver 11 non 013 Moo II Cum On ,IL 99/10 2.00 am 4.00 1174 In 02/02 1.00 0.00 0.00 0.34 VI Inv IL 01.51 ell II PAU, $48.14 Pl//C 149 0.40 C.00 Prtitl 1.09 0.00 0.00 0.10 570 Mw 11 47.54 PPI ie PALM KV ..1. 59/10 1.40 0.00 0.00 Ion 0.00 O.w 0.00 PI Moo 0.00 10,1 0.00 0.34 0.00 Pt Hp. It 05.15 Pit Inonlat 04.52 MI II 40.1.84 1801.19. 94.41 PI I 04 Maw 11 04.40 M InC01005 C33 Mn 11 IMO/ in V 19.1M Whet 036 Pre 11 04.53 PC 11111M . 02M11M.NMIccfy 18cm II 90/00 II C14 Irately VI..10 915 ~on el an 11 04.7.'40 v nut 4545 ON V 924•0 WI • IT. COMV 1.001 0.00 4.00 MI Mn II (00 Pao 11 05.01 PM it 92114 ACV .rt. PS/0V 1.04 0.00 0.00 5» Mn 12 04.52 MI M P/JJ1 910 icy 3.1 114.04 M WIN 1coalag 841 Mn 13 ova 0.20 0.00 4890 0000 IV* 0.00 07/50 3.00 0.90 0.00 07/40 140 0.00 0.00 0.00 /42 1.C• 4.00 0.09 1.09 0.00 00 sr. 22 00.53 Ali id 4012. M.1L /PO 140 4.00 0.0, 861 /80.8 12 04.53 1.14 I 2/ tv 3.00 0.00 144 ro . 12 DC.44 »eV PIP. tea Igo 1.00 3.00 005110, LI 0052 014 1.19.IM ICU .11 CTO 4400 1.00 180/911 1.44 0 00 012 Mn 11 05.10 CM Sealy PVICIINV Inn 0.34 0.40 013 Mn 11 05.1.1 M Pan Can 0.00 0.10 0.0) 411/080 IVO 0.00 2.00 0.00 IsiMimbeg I« it van tat .n. 0.00 0.0, 011 Nov 11 01,00 WI M OHM 1101.1.1. 014 1.1w 11 03.14 in V MW ent.n. sex .71. 0.10 PALM 40 ,14 EFTA01714681
March 7, 2026 at 8:15 PM
epsteinweb.bsky.social
Parts 1-2/2 — EFTA00000473.jpg
#epsteinweb #efta00000473
https://epsteinweb.org
EFTA00000473 | EFTA00000473 1MMOMYOew .wY.yMry cis ea ~teen es løpelielesj.1 Trot enseesere c, velleMbide - keeled« ~leer • •re Sebe • ere beds *Ma I en . *tie rots** es, reel "ebest0<nMMm11YWd • ss ore ~tee« teeing me me • ye. tee cunt« estestion onseesseilk ~el . mane. i *nee So have eon. on ern consenassee •~ 4.41.3 Cal ser eeeelo One. Oleo ,0 '' Sge ran. " W. -he Leckie represented retsrene b nereVe""t conic. ea ~lee a Pend menesewes oaken« ~nee tend peer Sesser. r-gaancMa 10 th• ~Kama«. 05 breech 0 she pneme Peed ed etel ~se ~en POO, ken INS ets • soenl sou to fl ew Mee local wield coalte.. 1can's ~seek So V 5 Manors seenoree Fee ~Owe el • ~Os th OOMda M wean ba secede reefs Sees VW ennee Itefene a t~.1 Mn . 1.00 • • beer netelletiess. I peresasel weals oce e saseen a Nee .msees Cued «amerc Petals elan!~ bends pesi ideloftal He glac,me. sob% the *ekes.oencem wane Poem envy]. silo ~lee" ~ s aber« She MI . Tn. Owen*. the can. ad telecid•boa thermal* <Merges %Meet Ken vidaite Mr. Icahn, . %We. ago Mee ~H. oessee. se see Septette. • Sheen saner rlie Merl emmdpH«Opu Wanks Meson seel W teensave to p ee se nee,. ss Wlrµ.d. a es a ~woe s tes eitornee she OM ~el In hat ma bterk IM lave~ th. system ot /e~. se. We Is Shen lob wed en en Gee lee Skews hes Wed ~Pt Wed."tM ose Oraessel. I tee office Pere ea steel e Sanitis Senors noes, n seesercenglee. la me et • is» Mpe1< WN ~Wk. • hires precede. poem^ MlMedsy, Went et nee* Win eet est nested • as ebe use AM led meet ~we boles, You coxes 11105414 Ina It . your rennet noted in Mead esessel hest • ffle sestina end the Wo would here eneiraCees Ulf«fa r eel. every peenereetseten. woe. De sanely ilesetlel "MS seine ~let 225S sneerer* Met 1ppW A," P1.41plan tedlrenkte• ~lee nth' Wnn00 ~eau Neon SUKulln due wen enn Id he"' lob" She l loe sole cam«. or° nee. MV ~ lessen been celt res.kW 01ilieMe~t faro wane., avant Ilt it/a., or ~0c...t ~Ira, 0.1h~ as Ow lee*. Vow *off oseoce• *pane eel Mane« Process, Me eremitical, ~le Wen, " a Pamh“ ~awn snimen el Minn lattid reaneenoentstrOns ,you were ern. case nasal bnr gee too 141el ewer. You men espy et the eel" ~treed ~se sells ~awe m elprpeeteetelateendect ~estee bead' «flank...ease of the mess ItInteln « ewer THI We We lung meant PASCO ON De MW %ACTSM1D nib, a the raceprk babel eel «wee ti ten OKI IM ale n seheb stele ~eldest non. are *en t. brieetle be see (*me Ow gene* need le MINN whither es to he reread WI Sea needs Yens Itelsee breagg Welch re* .raan ~Minna an. thin del•ple aPPen, and Its prete be es. bey Ktultlir WI *Mg Mb ~case "totene OW P•OfONL 10~ bald told ~~ ".. : WP Ilene* n s03.~ .sd ranee n sampled ley hen tMd. You WnpM Isom em sure you teener.rd k oelestteers Worsen rotrosen enders nounsenet. iim rl "Inn" earl Mid 10 WOWS (10~ IA ab oaslas eeellesell MCA . ebeenC t dyr er One to es I'd le eel* , si ck a be cos wen pu aeon WY Weeps, el ewe II" Tee pros* conlefetWIIIINI.M4 . Thee We. W. back you ewe le ~tea ad OW ~FS whole Conseesuiress -the nu are seen ~Peels seen so ~en» ~Al be pane moth Yee ewe d brawle They axle &bib inal ~timed Cs this a». cowme. Ilse cue ~woe be erode orgeobe re. ~1 .• Teela WWI^ ~ad SW Is be en mane le los•01 naPUr SI the ltd ~ 1. eliete0 IS an. wlnm senesce twin r.amicorythci ennolSedand WT. weeper ileerneni • that. e the 10 ret ~send tales ore. r r thee Mae weed In n cottoned MM. I leaf does I Md easel, e0ø, e. Wake* at subte OM to ~Oa ale Sew M NA • and Mn. ØM Men closr n rodde pea the led ~bees omsnei I I Stink the %she (wee connanap se VeretMtataa I hen EFTA00000473
February 10, 2026 at 3:43 PM
respifil.bsky.social
🔴 #ERSCongress - what can #ERN-LUNG offer for the future?

Artificial intelligence #AI in the #diagnosis and #treatment of #rarerespiratorydiseases by
@goetheuni.bsky.social #IMI: potentials / risks

▶️ Replays on MyERS @europeanrespsoc.bsky.social.

#OrphaLung #PulmoTension #RespiRare #RespiFil
October 1, 2025 at 9:01 AM
respifil.bsky.social
🔴 #ERSCongress - what can #ERN-LUNG offer for the future?

#CPMS2.0, outil européen de réunions de concertation pluridisciplinaires #RCP présenté par Dr Sabina Solinas #CRMR #PulmoTension @hopitalbicetre.bsky.social et Pr Helge Hebestreit @uni-wuerzburg.de

@filieremucocftr.bsky.social
#RespiFil
Le CPMS2.0, outil européen de réunions de concertation pluridisciplinaires est présenté par le Dr Sabina Solinas du CRMR PulmoTension et Pr Helge Hebestreit. Le CPMS2.0, outil européen de réunions de concertation pluridisciplinaires est présenté par le Dr Sabina Solinas du CRMR PulmoTension et Pr Helge Hebestreit. Le CPMS2.0, outil européen de réunions de concertation pluridisciplinaires est présenté par le Dr Sabina Solinas du CRMR PulmoTension et Pr Helge Hebestreit.
October 1, 2025 at 8:32 AM
respifil.bsky.social
🔴 #ERSCongress - #ERN-LUNG for future?

Présentation :
🔹️ de la structuration, des actions par le Pr Marc Humbert vice-coordonnateur de l'ERN et coordonnateur du #CRMR #PulmoTension
🔹️ de l'académie par Elisabeth Dorfmüller @hopitalbicetre.bsky.social et le Dr Thomas Koudstaal @euralumni.bsky.social
October 1, 2025 at 8:20 AM
respifil.bsky.social
🔴 #ERSCongress
Session dédiée à la #lymphangioléiomyomatose où le place des patients mais aussi des réseaux européens tels que l' #ERN-LUNG avec les réunions de concertation pluridisciplinaires #CPMS2.0, @eurordis.bsky.social ont pu être abordés.

#LAM #OrphaLung #FLAM
#Lymphangioleiomyomatosis
September 30, 2025 at 5:47 PM
respifil.bsky.social
🔴 Live #ERN-LUNG Board Meeting : échange sur le CPMS 2.0, l’outil européen équivalent aux RCP en France.
🔗 Accès : cpm2.ern-net.eu/sceen/home

#ERNLUNG #MaladiesRares #CPMS2.0 #RCP #Europe #Agenda #Formation
March 24, 2025 at 11:51 AM
respifil.bsky.social
🚀 Lancement du 9ᵉ #ERN-LUNG Board Meeting à Paris les 24 & 25 mars 2025 !
📅 Au programme : sessions plénières, groupes de travail, discussions sur les avancées #maladiespulmonairesrares.
🎤 Ouverture par le Pr Marc Humbert @univparissaclay.bsky.social & le Pr Thomas Wagner #UniversitéFrancfort
March 24, 2025 at 9:32 AM
svhglibraries.bsky.social
pubmed.ncbi.nlm.nih.gov/41918953/
Access to lymphangioleiomyomatosis care across Europe: an ERN-LUNG survey of clinical practice, and the case for a European registry and trial network - PubMed
<span><b>A European LAM Registry would enable standardised data collection, support clinical research and facilitate transnational collaboration, establishing an optimal platform for advancing care and developing a coordinated trial network</b> https://bit.ly/4no2xlr.</span>
pubmed.ncbi.nlm.nih.gov
April 9, 2026 at 10:27 AM
svhglibraries.bsky.social
pubmed.ncbi.nlm.nih.gov/40912974/
ERS/EULAR clinical practice guidelines for connective tissue disease-associated interstitial lung disease developed by the task force for connective tissue disease-associated interstitial lung disease of the European Respiratory Society (ERS) and the European Alliance of Associations for Rheumatology (EULAR) Endorsed by the European Reference Network on rare respiratory diseases (ERN-LUNG) - PubMed
We provide practical guidance by evidence-based recommendations to clinicians for each of the CTDs. In many cases there is low certainty or absence of evidence and we encourage further research to fill these gaps.
pubmed.ncbi.nlm.nih.gov
January 26, 2026 at 12:50 PM