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.
Empowerment time!
Deepen your understanding of pre-clinical research🔬 to effectively participate in discussions with researchers. Apply now for the next #EURORDIS Winter School taking place 21-25 March 2022.
https://openacademy.eurordis.org/winterschool/...
#EURORDISOpenAcademy #EURORDISWinterSchool
#25YearsOfInnovation🧬
#Alkaptonuria is a genetic disease first described in 1902. Thanks to the partnership through the #EU project the 1st treatment have been approved in Europe in 2️⃣0️⃣1️⃣2️⃣.
Hear all the story from @Nick_Sireau, ... @AKUSociety.
📌More: https://bit.ly/3xzQatm
Do you know the next Black Pearl Awardee?
There’s someone in your network who has improved the lives of people living with a rare disease through their extraordinary efforts. Let’s get their contribution noticed! Nominate them today!
👉 ... https://blackpearl.eurordis.org/nominate/
Where do you see yourself in 🔟 years?
Nearly half of people living with a rare disease hope to successfully manage the symptoms of their disease, even if they are progressing.
Learn more! ℹ️ ... https://www.eurordis.org/publication/future-rare-diseases-leaving-no-one-behind
The @EU_Commission's decision to abandon the operating grant in the 2021 Work Plan undermines the ability of EURORDIS and other European health NGOs to contribute meaningfully to implementing EU4Health programme’s objectives. #SaveEUHealthNGOs
... 👉https://epha.org/wp-content/uploads/2021/06/csos-response-to-work-programme-updated.pdf
Dear UN... ✉️
What challenges do you face in your daily life with a rare disease?
Help UN policy makers understand and empathise with the challenges individuals, caregivers and families face by sharing your testimony!
... https://www.rarediseasesinternational.org/dearun/
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
¿Quieres saber más sobre las políticas que se proponen para dar forma al futuro de las #EnfermedadesRaras y #MedicamentosHuérfanos en el 2030?
Descarga el resumen ejecutivo de la conferencia #ECRD2020. En inglés, pero muy visual y sintético.👇
... 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
¿Quieres saber más sobre las políticas que se proponen para dar forma al futuro de las #EnfermedadesRaras y #MedicamentosHuérfanos en el 2030?
Descarga el resumen ejecutivo de la conferencia #ECRD2020. En inglés, pero muy visual y sintético.👇
... http://download2.eurordis.org.s3-eu-west-1.amazonaws.com/ecrd/2020/Executive%20Summary%20Final%20Version.pdf
¿Quieres saber más sobre las políticas que se proponen para dar forma al futuro de las #EnfermedadesRaras y #MedicamentosHuérfanos en el 2030?
Descarga el resumen ejecutivo de la conferencia #ECRD2020. En inglés, pero muy visual y sintético.👇
... http://download2.eurordis.org.s3-eu-west-1.amazonaws.com/ecrd/2020/Executive%20Summary%20Final%20Version.pdf
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