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.
Do you know what European Reference Networks (ERN) do for people living with a #RareDisease?
🔹 Watch this video & learn how ERNs can support your doctors to get advice on your diagnosis and treatment.
#LetsIntegrateERNs
Full video in all 🇪🇺 ... languages: https://audiovisual.ec.europa.eu/en/video/I-193046?lg=EN
🎉 Thanks to all our jury and Rare2030 young citizens for an excellent debate on issues such as discrimination, holistic care (mental/sexual health) and how collaboration across Europe (An EU Agency for RDs?) can help achieve this!
🔗 More info soon on ... https://www.rare2030.eu/
I am pleased to announce that following @EMA_News recommendation & the excellent work carried out by #EUfunded #DevelopAKUre, the @EU_Commission has adopted the Decision to extend marketing authorisation for Orfadin for the treatment of #Alkaptonuria👏
... ➡️https://europa.eu/!ft86VC
📢The RDI October Newsletter is out today
This month we will talk rare disease #diagnosis in #Mexico with @FEMEXER , @InfoAliber 's 8th Meeting and #RAREFest20 and other online events in November.
@eurordis @cord @RareConnect @enfermedadrara
... 👉https://www.rarediseasesinternational.org/monthly-newsletters/
Don't miss the chance to follow live the @Rare2030 Young Citizen Fall Debate today! #RareDiseases 👇
Sara is a Canadian women 🇨🇦 who has been living with #EosinophilicEsophagistis for 15 years. She has found support in online groups. 💬
“Being rare has made me understand anxiety. It’s made me realize my self worth.” #RareDiseaseDay
👉Tell ... your story: https://www.rarediseaseday.org/tell-your-story
On top, and left, on page 25 in the report from #ECRD2020 from @eurordis you can spot a social media post on my poster on a #patientperspective on #aorticdisease @RareConnect @rarediseaseday @VascularCures @Vascupedia_com @ADCollab @AorticDisorders @ThinkAorta... @vascern @vascunet
På sidan 25 i nya ECRD rapporten, längst upp till vänster - ser ni en Poster från Sverige om #Aortasjukdom ur ett #patientperspektiv som var med på #ECRD2020 @sallsynt @HjartLung @hjartlungfonden @hultgrenrb @sahlgrenska @Akademiska_Nytt @KarolinskaUnsju
#ECRD2020 nu kan du se vad den ledde till.
Men visste du att du fortfarande kan titta på materialet på ECRD hemsida?
#SällsyntaDiagnoser #SällsyntaLiv #WeAreNotRare
The executive summary of the #ECRD2020 is out now! 🔵
Learn more about the policy issues that will shape the future of #RareDiseases and Orphan Products in Europe.
Download the summary ... 👉http://download2.eurordis.org.s3-eu-west-1.amazonaws.com/ecrd/2020/Executive%20Summary%20Final%20Version.pdf
Read our comprehensive review of #ECRD2020, including articles on newborn screening, artificial intelligence, and disruptive #innovations in clinical research. https://bit.ly/2W24zgX
#Artificialintelligence #Clinicalresearch #AI #Medicalinnovation
For this issue, we attended the virtual ECRD Congress. Read our comprehensive review, including articles on newborn screening, artificial intelligence, and disruptive innovations in clinical research. https://bit.ly/2W24zgX
#AI #Rarediseases #Clinicalresearch... #ECRD2020
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