Top Tweets for #MetabERN
El Viaje del Paciente con deficiencia de PDH excelente trabajo #MetabERN #Freyra #enfermedadesmetabólicas #enfermedadesmitocondriales @Metabolicos_es @SJDmetabolicas @uiem2017 @Aecom_EIM @Metab_ERN @FEDER_ONG
💜💚💙#diamundialdelasenfermedadesraras
#RareDiseaseDay
🔹visibilidad, concienciación
🔹docencia, formación
#CSUR patología hipofisaria, enf. metabólicas congénitas
Red Europea Referencia
#EndoERN #metabERN
#somosHUVR
@ibis_sevilla @HospitalUVRocio
https://t.co/vCoeqsVH7G
🔝🔝Participamos en redes europeas de referencia en #EnfermedadesRaras
#ENDOERN: patología compleja hipotálamo-hipofisaria.
#MetabERN: enfermedades metabólicas congénitas
#somosHUVR
@HospitalUVRocio
@LaVanguardia
https://t.co/sClJ4Ywccu
Excellent speakers, great discussions and fruitful collaborations at the 2022 #Metabern board meeting.
See what is ongoing in #newbornscreening and rare metabolic education. IPOPI, Screen4Care, ISNS
Thank you to all our members, partners and external speakers in person and online for such a successful #MetabERN board meeting in 2022! We look forward to meeting you again at the next #MetabERN2023 meeting!
Great start to day three of the 2022 #MetabERN board meeting. Ronan Fleming presenting on Computational Medicine.
#ERNeu #RareDiseases
What an eventful first day of the 2022 #Metabern board meeting. Wonderful speakers, great discussions and fruitful collaborations. Here are some highlights of the day. See you tomorrow 😀
💜💚💙#DiaMundialDeLasEnfermedadesRaras
#RareDiseaseDay
🔹visibilidad, concienciación
🔹docencia, formación
#CSUR patología hipofisaria, enf. metabólicas hereditarias
Red Europea Referencia
#EndoERN #metabERN
Referencia andaluza Rehabilitación Intestinal @CirugiaHUVR
Currently connected to the first day of the 2022 MetabERN annual meeting with an impressive agenda and eager to see with perspective everything that has been achieved and all the objectives and future work to be done.
#MetabERN
#HereditaryMetabolicDisorders
#RareDiseases
📣 We are excited to announce that our newly redesigned website is online!📽️
Read the press release https://t.co/WNNGzXlSKj and visit the different sections to discover all the new features! https://t.co/VdGuDisQ0c
#ERNeu #RareDiseases #MetabERN
🎯Resultados del Estudio de Necesidades sociales y médicas de pacientes metabólicos de #MetabERN 📊publicado 03-08-21 https://t.co/KgfCTTIUk2 #enfermedadesmetabolicas #necesidadadesmedicaspacientes #necesidadessociales #insercionlaboral
An important rare disease publication that I am happy to see published. Thanks to all my co-authors & all that contributed. Did you know...there are more patients affected by rare diseases in the world today that there are by Cancer and Covid 19
#MetabERN
https://t.co/vmsu1fd4W6
MetabERN Newsletter: 10/2020 - https://t.co/KH3zQ6Sc1Y Welcome to the MetabERN newsletter. Take a look to find out what this month's edition has to present - UIMD website, emergency protocol to name a few.
#metabern #ERNeu #rarediseases #news
Patient-doctor exchange at its best: in this podcast Dr. @TGJDerks and @NinalaguerreraO talk about the inherited metabolic and rare #GlycogenStorageDisease 1b #UMCGimpact #rarediseases #metabern #ERN #glucogenosis #glicogenosi
https://t.co/dCiCoOW9tf
Our community is very happy to be able to continue receiving #Kanuma #ERT them and without treatment the patients could get worse.
@eurordis #StrongerTogether
#MetabERN #ERN #LALDeficiency #LALD #LALDisease
Hoy celebramos nuestro III Encuentro de Familias Afectadas por #LALD en la Fundación ONCE de #Madrid.
Muy contentos de poder compartir esta jornada junto a las familias y los profesionales implicados con nuestra causa.
#MetabERN #LALDeficiency #LALDisease #CESD #LivingWithLALD
Hoy hemos acudido al rodaje del spot de @la_marato q este año colaborara para investigación d #EnfermedadesRaras
#ShowYouRare #MetabERN #ERN
#LALDeficiency #LALD #LALDisease #LysosomalAcidLipaseDeficiency #WolmanDisease #CESD #LysosomalStorageDisorders
Hoy hemos tenido la oportunidad de defender los intereses de las personas afectadas por #LALD en el encuentro formativo organizado por @Alexion en Zurich.
Gracias por vuestro apoyo!
#MetabERN #ERN #LALDeficiency #LALDisease #LysosomalAcidLipaseDeficiency #WolmanDisease #CESD
Asistimos a la Jornada para pacientes organizado por #Ciberer en el #ESCGT 27th Annual Congress en #CCIB de #Barcelona
#MetabERN #ERN #LALDeficiency #LALD #LALDisease #LysosomalAcidLipaseDeficiency #WolmanDisease #CESD #LysosomalStorageDisorders #LSD #LivingWithLALD #RareDiseases
III Encuentro de Familias afectadas por #LALD el próximo sábado 9 de noviembre de 2019 en la #fundaciononce de Madrid
#MetabERN #ERN #LALDeficiency #LALD #LALDisease #LysosomalAcidLipaseDeficiency #WolmanDisease #CESD #LysosomalStorageDisorders #LSD #LivingWithLALD #RareDiseases
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