Cari amici di NAnA, oggi alle 16 Donatella Capone parlerà alla Conferenza “Il Paziente con Neoplasie Ematologiche” sulla malattia rara.
Collegati qui: neoplasieematologiche.it
#NeoplasieEmatologiche2024 #CuraDelPaziente #uniamo EURORDIS-Rare Diseases Europe uniamomalattierare #AML #LMA
¿Qué es la hipertensión pulmonar? Ayúdanos a seguir difundiendo sobre esta rara patología, para que tengamos diagnósticos a tiempo y tratamientos integrales. EURORDIS-Rare Diseases Europe Percy Mayta-Tristán RPP Noticias Elmer Huerta Alicia García maritza rodriguez Exitosa Noticias La República
ESMO has published a statement on rare cancers that highlights their complex nature and the challenges they pose.
@myesmo EURORDIS-Rare Diseases Europe
linkedin.com/posts/european…
'Major survey reveals rare disease community’s overwhelming support for screening at birth'
Time to end the #DiagnosticOdyssey for individually rare collectively common #RareDiseases
go.eurordis.org/BCvcLA
Des de
Fundació Fundació Dr. Torrent-Farnell continuarem treballant amb accions formatives i divulgatives per continuar el llegat iniciat el 2000 donant veu als pacients en el COMP/EU Medicines Agency, que va donar lloc a la formació de pacients amb @EURORDIS, #AEMPS CIBERER Salut #JuntsFemPinya
Buenas noches Argentina🇦🇷
#7argentinos fallecieron por el cierre de la DADSE y la suspensión de medicamentos de excepción.
Yo soy una de las personas que usa medicamentos de excepción por #RareDisease #enfermedadesraras y soy testigo del corte en la entrega FEDER | Enfermedades Raras EURORDIS-Rare Diseases Europe
We would like to thank Chiesi Group for their support of #ECRD2024 and their continued efforts in striving to co-create a brighter future for the rare disease community. 🤝 Chiesi Global Rare Diseases
See the full list and secure your space to join us! 👉 go.eurordis.org/hVPVPA
🎉 A new version of the ERN eUROGEN Patient Journey for #AnorectalMalformation is published. 📍
Read more: eurogen-ern.eu/ern-eurogen-pa…
🙏 Many thanks to our ePAG reps & EURORDIS-Rare Diseases Europe for their support in producing this!
#RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg
Positively styling life with Lymphoedema 💁
Tune in to the brand new episode of #EurordisRareOnAir in which host Julien Poulain speaks with Nicole Faccio, an inspiring social media advocate and winner of the 2023 EURORDIS Social Media Award. ✨
🎧 go.eurordis.org/Jeh4A0
👉 EURORDIS-Rare Diseases Europe has released Speak up. Listen up. Follow up: a Survey Design e-Toolkit!
This step-by-step guide will help you in creating a designing an effective survey.
Find out more 👇
eurordis.org/survey-design-…
🗓️It is still time to register! Do not miss this very interesting webinar organised by Associazione TUTOR Tumori Toracici Rari on 14th May and register via the link: tumoritoracicirari.it/3rd-webinar-eu… EURORDIS-Rare Diseases Europe
Want to discover the latest innovations from the #RareDisease space?
EMJ are proud to partner with EURORDIS-Rare Diseases Europe for the European Conference on Rare Diseases and Orphan Products.
Register here to attend: hubs.la/Q02wN-g30
Look out for EMJ's full #Congress coverage in July!
Over 5,000 participants made their voices heard across Europe!
The #RareBarometer survey on the opinion of people living with a rare disease revealed that 70% of participants would have liked their condition to have been diagnosed at birth.
🔗 go.eurordis.org/BCvcLA
EURORDIS stands alongside fellow members of The #EU4Health Civil Society Alliance in reiterating concerns over the midterm review of the EU Multiannual Financial Framework.
Read the full letter: eu4health.eu/for-a-strong-a… ⬇️
El uso de ambroxol para el tratamiento de la enfermedad de Gaucher. Primera revisión sistemática.
doi.org/10.1002/jha2.8…
AEP Sociedad Española de Neurofisiología Clínica SEN SENEP S.E.F.H FEDER | Enfermedades Raras CIBERER EURORDIS-Rare Diseases Europe RarasNoInvisibles
