eGLILDnet

The official Twitter account of ERS CRC eGLILDnet - promoting better care and research for those with CVID+granulomatous-lymphocytic interstitial lung disease.

[eGLILDnet @glildnet]

*NEW* 👀

Our research prioritisation for #GLILD in #CVID is now published in @ERSpublications ERJ Open Research.

Thanks to all those @EuroRespSoc @ESIDsociety and @ipopi_info for taking part.

People living with GLILD deserve more evidence-based care.

https://t.co/tBhv34b4ML

[John Hurst @ProfHurst]

I'm proud to be a member of the @EuroRespSoc, and really value the Clinical Research Collaborations which bring together multiple stakeholders to collaborate on a specific area in respiratory medicine. CRCs aim to advance science and research, and improve respiratory health 1/n

[John Hurst @ProfHurst]

Do you recommend biopsy in a person with suspected GLILD?

What are colleagues doing?

When might you not need to biopsy?

👀 ⬇️

[John Hurst @ProfHurst]

I’m part of the @EuroRespSoc @glildnet collaboration that aims to improve outcomes in #GLILD.

We are interested in knowing more about reasons clinicians do or do not pursue 🫁 biopsy.

Thanks for sharing this, and completing it if you have experience.

https://t.co/qi62rat4Zb

[Heba Bintalib @Heba_Bintalib]

Exciting news🎉My chapter on "Granulomatous & lymphocytic interstitial lung disease in common variable immunodeficiency" coauthored with @ProfHurst and Prof. Siobhan Burns is now published in ERS Monograph: Rare Diseases of the Respiratory System! https://t.co/HPIHVdehX2. #GLILD

[Heba Bintalib @Heba_Bintalib]

Are you a clinician interested in #GLILD?🩺🫁

Our survey to help understanding current practices and considerations in lung biopsy for suspected GLILD is open here: https://t.co/z6pEpFkfD2

Participate now and contribute to advancing knowledge in the field. @glildnet @ProfHurst

[eGLILDnet @glildnet]

💥 NEW 💥- Pleased to share this, from a 🇬🇧 team working in #GLILD - great work led by @Heba_Bintalib. 👏🏻

[ERS publications @ERSpublications]

The use of MMF is associated with long-term effectiveness in GLILD and permits weaning of corticosteroids. A delay in initiating and continuing maintenance treatment could lead to disease progression. https://t.co/10YwJaj1K5

[John Hurst @ProfHurst]

Wait for me!

Excited to be sharing an update on the @EuroRespSoc @glildnet Clinical Research Collaboration at #IPIC5 today!

Such a great community…

[John Hurst @ProfHurst]

We report the prevalence of #bronchiectasis and #GLILD in #CVID in 110 people from our @RoyalFreeNHS cohort, and show that lower pre-replacement IgG and lower long-term IgM are risks for the development of bronchiectasis. Lower QOL in those with Bx.

https://t.co/Y0MoWohu1L

[eGLILDnet @glildnet]

This is going to be great. A chance to hear from experts about management of #GLILD in #CVID and to ask those difficult questions…

[ESID @ESIDsociety]

📢Don't forget to sign up to this fascinating #ESID Grand Webinar! https://t.co/MGB76wjHm3
@ProfHurst @Siobhan13592648

[ESID @ESIDsociety]

The first ESID #Grandrounds for 2022 is available for registration - @Siobhan13592648 will lead a fascinating discussion on Interstitial Lung Disease (ILD) in Common Variable Immunodeficiency (CVID). @GLILD @glildnet
Sign up today!
https://t.co/MGB76wjHm3

[eGLILDnet @glildnet]

We had our Steering Committee meeting today and have B I G plans for 2022 - watch this space 😉

[eGLILDnet @glildnet]

Thanks to @TakedaPharma for the opportunity to talk about eGLILDnet, #GLILD and the value of multi-disciplinary teams in the care of complex immunodeficiency at the IGNITE forum today. Great discussions.

[eGLILDnet @glildnet]

It’s a big day for us @EuroRespSoc #ERSCongress as @HebaB6 presents the results of our patient-clinician research prioritisation exercise for #GLILD in #CVID. Thanks to everyone for the support, including our friends at @ipopi_info and @ESIDsociety

Live talk 930 CET. Results ⬇️.

[eGLILDnet @glildnet]

We are very pleased to have held our first #GLILD MDT today with participation from 🇩🇰 🇫🇷 🇩🇪 🇸🇪 🇬🇧. We hope this will be a useful resource for @EuroRespSoc members and beyond. Do be in touch if you want to know more!

[eGLILDnet @glildnet]

Latest paper in collaboration with our network, see ⬇️ by our co-chair @ProfHurst.

[John Hurst @ProfHurst]

Very pleased to be a very small part of this important systematic review of treatment for #GLILD in #PID. May be of interest to those in @ipopi_info @ESIDsociety @theukpin and @EuroRespSoc. Completed in association with the ERS @glildnet CRC.

https://t.co/iin5t8EpKo

[Johan Prevot @JohanPrevot]

Great talk by @ProfHurst live now in @ipopi_info webinar on #lung complications in #PID
Focus on acute infections + chronic complications #bronchiectasis Missed it? Watch on IPOPITV or our YouTube page !
#GLILD #lymphoproliferation #primaryimmunodeficiency @glildnet

[eGLILDnet @glildnet]

A big shout out to all those living with #GLILD in #CVID this #RareDiseaseDay2021 - our @EuroRespSoc funded CRC continues to work towards a brighter future.

Our research prioritisation work is now complete and we will be releasing the results very soon! Stay tuned!

[ERS @EuroRespSoc]

Are you an adult or paediatric #immunologist or #pulmonologist? 👩‍⚕‍ 👨

The @glildnet Clinical Research Collaboration is conducting a survey to determine the most important areas for research in GLILD.

Take the survey by 31 December: https://t.co/K4lvPzEqTc #GLILD

[ERS @EuroRespSoc]

Calling all adult & paediatric #immunologists & #pulmonologists. 👩‍⚕‍ 👨‍⚕‍ Do you manage patients with granulomatous-lymphocytic interstitial lung disease?

Vote for your top ten unanswered questions for the @glildnet survey: https://t.co/K4lvPzEqTc