LEARN
about the latest advances, challenges, facts, figures and trends in the field of rare diseases with over 100 expert speakers.
SHAPE THE FUTURE
of rare diseases alongside patient advocates, policy-makers, healthcare industry representatives, clinicians, payers, regulators and Member State representatives.
NETWORK &
SHOWCASE YOUR WORK
to all stakeholders of the rare disease community.
Last chance to join the @EMA_news workshop on medicine development in the EU!
🗣️ @VirginieHivert (EURORDIS) will be one of the speakers!
📅 November 30 - 9:00-13:00, CET
👉Registration: ... https://www.ema.europa.eu/en/events/workshop-support-orphan-medicines-development
#COMPworkshop2020
The RE(ACT) Congress and @irdirc Conference go fully online in 2021!
This event will bring together scientific leaders and experts and young scientists to advance policy and research on #RareDiseases.
📅13-15 January 2021
🧑💻 Online
Register ... here: https://www.react-congress.org/attendees/registration-2/
Do you know how many #raredisease appointments were cancelled or postponed because of #COVID19?*
🧑🦽 80% of rehabilitation therapies
💉 6 in 10 surgeries or transplants
🏥 70% of appointments
... 👉https://www.eurordis.org/publication/how-has-covid-19-impacted-people-rare-diseases
*Of 83% people whose care was disrupted
This week is the last week of our @imi_paradigm project!
Over the last 3 years we have developed tools and recommendations to make patient engagement easier for all.
Congratulations to all the people involved! 🥳
Download the tools here 👉 ... https://imi-paradigm.eu/petoolbox/
Last chance to join the LIVE launch of the #RareImpact report!
What are the challenges and solutions for improving patient access to advanced medicinal products at the European level?
TODAY from 14:00 to 16:00, CET.
👉Register here: ... https://us02web.zoom.us/webinar/register/WN_0THyzz6gRD-tH6eT420XEA
Fantastic! @EMA_News listened to our call with @eupatientsforum & have organised a public stakeholder meeting on the development & authorisation of safe & effective #COVID19vaccines in the EU. This event is important for ALL patients!
Read our ... letter 📝: http://download2.eurordis.org/EURORDIS_EPF_joint_letter.pdf
[ACTUS] Découvrez le résumé de la 10e Conférence européenne sur les maladies rares. @ern_reconnet #ECRD2020 #MaladiesRares
https://bit.ly/36TFbPm
🌟The OJRD Supplement showcasing top scoring abstracts from #ECRD2020 is now available @eurordis @ojrarediseases
https://ojrd.biomedcentral.com/articles/supplements/volume-15-supplement-1
The interactive Executive Summary of the #ECRD2020 is now available online ➡️https://www.rare-diseases.eu/previous-ecrds/
A special supplement with selected poster and speaker presentation abstracts is available on @ojrarediseases ... https://doi.org/10.1186/s13023-020-01550-1
#RareDiseases #OrphanProducts @eurordis
The 10th European Conference on Rare Diseases and Orphan Products #ECRD2020 Interactive Executive Summary is now available online #RareDisease
https://ern-ithaca.eu/ecrd-2020-interactive-executive-summary-ojrd-supplement-online/
⏯️ En 2019, @aveuglesGE a participé à la réalisation d'une vidéo sur l'accueil des #aveugles et #malvoyants à l'hôpital avec @Aveugles_France et @sensgene.
➡️ Cette vidéo a été traduite en anglais par @ErnEyeEU et est citée dans le journal ... @Orphanet !
#ECRD2020
Voici le supplément spécial de l'#ECRD2020 avec un article sur la vidéo réalisée par SENSGENE et @Aveugles_France traduite en anglais par @ErnEyeEU. Ce supplément a été publié dans The @Orphanet Journal.
... ➡️https://ojrd.biomedcentral.com/articles/supplements/volume-15-supplement-1
➡️Voir la vidéo : https://youtu.be/RvtMWZRpLeg
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