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@Leonie_Schreck
@jamesjt89
@PCDresearch
@PCDAustralia
@McilwaineClaire
@SusiShanks
@bruna_rubbo
@erin_cant
@PCDsiGirl88
@Peuchamiel1
@MaryKitlowski
@MariaC_Mallet
Muchísimas gracias Cristina❤️❤️ por compartir con toda la comunidad internacional🌍 de afectad@s por Discinesia Ciliar Primaria tu trasplante de pulmón🫁. GRACIAS por VISIBILIZAR esta situación. 👇 Aquí el enlace: beat-pcd.squarespace.com/patients Lo encontraréis hacia el final...
Both events were #LiveScribed by the marvellous man & his markers Jonny Glover (morethanwords.co.uk) - capturing all the important messages about how to improve outcomes for patients with #PCD! Lots to think about, and even more to set in motion. #RareDisease /fin
The meeting looked to reframe the narrative of #PCD as a mild disorder, to advocate for more investment in PCD research & accelerate access to clinical trials necessary for much-needed treatments. It will be a truly international effort for what lies ahead! #PCDAwarenessMonth
Just over two weeks ago, we kicked off #PCDAwarenessMonth with a BANG- we were able to be part of 2 back-to-back amazing patient organization-led #RareDisease events as part of our new @lifearc1 Centre for Rare Respiratory Diseases. #PrimaryCiliaryDyskinesia #PCD #ciliopathies /1
🎉 We're excited to share our first video on the importance of airway clearance for PCD! It's a helpful guide for parents and patients to manage respiratory health. Watch now! 👇 ow.ly/m0es50TIGWE 💨 #PCD #AirwayClearance #RespiratoryHealth #PatientEducation
Asociación Española de Discinesia Ciliar Primaria/ Síndrome de kartagener: APOSTANDO FUERTE POR NUESTRO FUTURO: GETTING CILIA... dcpes.blogspot.com/2024/10/aposta…
El cientifico #SammyBasso. Ha fallecido un LUCHADOR que buscaba el tratamiento para su enfermedad, la Progeria de Hitchinson Gilford. Gracias Prof Carlos L Otin por descubrirnos su historia
Very excited to have this project funded by @snsf_ch! It will support 2 large international collaborative studies addressing unmet research needs in the field of #primaryciliarydyskinesia. Can't wait to start working on this!
SNSF project grant on unmet research needs in primary ciliary dyskinesia – Myrofora Goutaki has been awarded a Swiss National Science Foundation project grant to tackle two important and clinically relevant aspects of primary ciliary dyskinesia (PCD). bit.ly/3YdyAdl
DCP España @dcpes_org acaba de asistir Día para la Aceleración de Industria en las enfermedades minoritarias centrado en la Discinesia Ciliar Primaria. Organizado por la Dra. Harriet Holme, presidenta de @PCDresearch . Nos llevamos tareas y mensajes clave para el CAMBIO!!
The PCD patient conference 2024 will take place online on Friday, November 29, 2024 from 2:00 to 6:00 pm (CET). Registration and information available on our website: beat-pcd.squarespace.com/events/2024/11…
Come to PS-20 for @Leonie_Schreck results on exacerbations in #PCD #ERSCongress @ClaudiaKuehni @mgoutaki
Latest data on exacerbations in #PCD presented brilliantly by @Leonie_Schreck @beatpcd @mgoutaki #BeatPCD2024
S Böker from « Leben mit PCD », the German advocacy group is presenting the patient perspective. More info bout this group on their website pcd-ks.info
Our own @Leonie_Schreck presents data from the #livingwithPCD study on incidence and predictors of pulmonary exacerbations among people with PCD #PCDVienna24 @PCD_ispm @ClaudiaKuehni @PCD_UK @PCDFoundation @dcpes_org @PCDAustralia
We are starting our inflammation in PCD session with our own @Shoemelia talking about neutrophilic inflammation #beatpcd2024
Back from lunch with our session on consensus guidelines: management of PCD chaired by @Shoemelia and nd @mgoutaki First speaker, E Dehlink, is presenting the current treatment approaches for PCD #beatpcd2024
A wife range of difficult cases presented in the current session coordinated by our @beatpcd diagnostic work package leads @_Claire_Jackson @mathieu_bottier and P.Kouis. #beatpcd2024 #PCDVienna24
We are starting the industry sponsored session on genetics and mRNA trials. First speaker is Heymut Omran on a update of PCD genetics #beatpcd2024
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Who to follow
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Leonie Schreck
@Leonie_Schreck -
James Thompson
@jamesjt89 -
PCDresearch
@PCDresearch -
PCD Australia
@PCDAustralia -
Claire
@McilwaineClaire -
Dr Susi Shanks
@SusiShanks -
Bruna Rubbo
@bruna_rubbo -
Erin Cant
@erin_cant -
Lynn Ehrne
@PCDsiGirl88 -
ADCP Sabine
@Peuchamiel1 -
Mary Rose Kitlowski
@MaryKitlowski -
Maria Christina Mallet
@MariaC_Mallet
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