SCETIDE

Registry of Stem Cell Transplantation for Primary immune deficiencies in Europe

[IPOPI @ipopi_info]

Last chance to register! 👇

We are starting this afternoon at 15h CEST.

[Nizar Mahlaoui M.D., M.P.H., Ph.D. @MahlaouiNizar]

New @CEREDIH article!
Impact of graft function on #healthstatus & #HealthQualityOfLife in 112 very long-term #survivors who received an #HSCT for #PID #IEI https://t.co/CmmOKYCWSx
#PrimaryImmunoDeficiency #RareDiseases @SCETIDE
@ESIDsociety @Filiere_MaRIH @APHP @hopital_necker

[SCETIDE @SCETIDE]

@ecmorris @_IEWP @ESIDsociety @theukpin @TheEBMT @CEREDIH as well ;-) #ePIDemiology

[Prof Emma Morris 💙 @ecmorris]

Allogeneic stem cell transplantation compared to conservative management in adults with inborn errors of immunity https://t.co/27VGewI1M1

Fab 🙌🇬🇧 🇫🇷 collab - case matched retrospective study - HSCT significantly reduces PID related events. Longer FU required to show OS benefit.

[IPOPI @ipopi_info]

Immunoglobulins are #EssentialMedicines for patients with primary immunodeficiencies recognised by the @WHO.

Collecting plasma is more important than ever to make sure plasma-derived medicines are available for patients in need.

#Plasmasaveslives #IPAW2022

[Association des Internes en Hématologie @AIHemato]

Journée DÉFICITS IMMUNITAIRES PRIMITIFS et HÉMOPATHIES INDUITES PAR LES INFECTIONS VIRALES CHRONIQUES de la Société Médicale des Hôpitaux de Paris #SMHP - Gratuite pour les internes - Vendredi 23 septembre 2022

[Nizar Mahlaoui M.D., M.P.H., Ph.D. @MahlaouiNizar]

New article😃in #BMT @NaturePortfolio on Curative allogeneic #HSCT following #ReducedToxicityConditioning in #YoungAdults with #PrimaryImmunodeficiency #PID #IEI reporting our experience of @hopital_necker @APHP @InstitutImagine @CEREDIH @SCETIDE @TheEBMT @ESIDsociety #Frontiers

[Institut Imagine @InstitutImagine]

Le projet « Imagine La Suite » a pour but de faciliter l’#insertion socio-professionnelle des jeunes adultes touchés par une #maladie #génétique rare et vivant avec un #handicap. Un grand merci à la Fondation Sycomore pour son implication dans ce projet !
https://t.co/x4ex0QQt8J

[IPOPI @ipopi_info]

Looking forward to this discussion on 'Transition Care-Exploring the Journey' starting in 2h!
You can still register: https://t.co/jxtlm6PLiT
@MahlaouiNizar from @lasuite and Dr Dalm from @ErasmusMC will take on this journey and share best practices
#PID #AdultCare #AYA

[Nizar Mahlaoui M.D., M.P.H., Ph.D. @MahlaouiNizar]

This is a great meeting to attend to if you are interested in #PrimaryImmunoDeficiencies #PID #InbornErrorsImmunity #IEI

[IPOPI @ipopi_info]

IPOPI's next Clinical Care Webinar is in 2 weeks and will explore a hot topic - PID and Vaccines.
The guest speaker is Prof Cunningham-Rundles from @MountSinaiNYC
Register now to guarantee your attendance https://t.co/ASDgtkRJUy
See you on Sep 9th at 15:00h UK time!

[IPOPI @ipopi_info]

IPOPI is excited to anounce that the 3rd Asian PID Meeting is taking place online on September 18-19!
We will have a medical education day and a patients meeting day to address the region's #PID priorities.

If you'd like to register give us a shout!

[MaRIH @Filiere_MaRIH]

Pour les patients atteints de déficits immunitaires, lettre d’information du @CEREDIH et @AssociationIris : https://t.co/LZUpcdwj7s

Pour tout autre information :
• Ministère de la Santé et des Solidarités https://t.co/LVCQw0kpFs

[Nizar Mahlaoui M.D., M.P.H., Ph.D. @MahlaouiNizar]

🚩#URGENT #Coronavirus : Mise à jour de la note d' #Informations + #recommandations à destination des #soignants @CEREDIH + patients #DIP #DéficitsImmunitairesPrimitifs @AssociationIris 👉https://t.co/pnyZoWLSmv @hopital_necker @APHP @Univ_Paris @InstitutImagine @Filiere_MaRIH

[Nizar Mahlaoui M.D., M.P.H., Ph.D. @MahlaouiNizar]

Thank you ⁦@petitsprinces⁩ for their article on our #Transition #Care #program for #AYA #RareDiseases #ChronicDiseases from #Pediatrics to #AdultCare @LaSuiteNecker ⁦@hopital_necker⁩ ⁦@APHP⁩ ⁦@piecesjaunes⁩ ⁦@FondationHPHF⁩ ⁦@InstitutImagine⁩

[Association IRIS @AssociationIris]

La greffe de moelle osseuse peut être un #traitement curatif pour certains patients atteints de #DIP. Plus y aura d'inscrits sur la liste, plus ils ont de chance de trouver un #donneur compatible ! #Don #déficitimmunitaireprimitif #maladiesrares

[IPOPI @ipopi_info]

Transition from paediatric to adult medical care is a special period of adjustment. Thank you all that help #PID patients and #RareDiseases patients through this fase.
@LaSuiteNecker @symesandrew @MahlaouiNizar

[IPOPI @ipopi_info]

IPOPI has issued a statement on the current epidemic of the new #Coronavirus.
#primaryimmunodeficiency patients should be cautious by keeping track of developments in their region and reduce exposure and transmission.

https://t.co/lGJBOrBnF7

[IPOPI @ipopi_info]

IPOPI's 13th IPOPI EU PID Forum was a success and the report is now online!
Full details on the Winter e-News article

https://t.co/1aSC8sok6R

[Nizar Mahlaoui M.D., M.P.H., Ph.D. @MahlaouiNizar]

⁦@hopital_necker⁩ #LaSuite programme gets #PrixGalien2019. Thank you ⁦@ipopi_info⁩ #eNEWS for your support. Proud to be #Chairperson of your Medical Advisory Panel. Congratulations on your hard work + dedication for #PID patients around the 🌍 https://t.co/DSX2QQgICH