European Conference on Rare Diseases

The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community – patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators.

Over 1500 registered participants convened from 57 countries – representing all stakeholders – to place rare diseases in the spotlight during this two day online conference. ECRD 2020 provided the opportunity to co-design policy options today that can lead to better conditions for people living with rare diseases for the years ahead. ECRD attendees spent the course of the conference laying the foundation of these preparations and all of you are invited to continue your involvement in Rare 2030 throughout the year!

Full content is still available on demand for one full year until May 2021! If you missed the opportunity to join the live online conference, you can still access recordings of all sessions by registering here.

Here is a taster of what you will be able to access:

Rare Diseases EuropeFollow

Rare Diseases Europe @eurordis·

Rare Disease Week has proved to be a success! 👏

38 advocates 📣
from 20 countries 🌍
representing 20 disease-specific areas🧬🧠🩸

…have been trained this week to better advocate at the European level for people with rare diseases!

... 👉https://www.eurordis.org/patient-empowerment-and-training

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Rare Diseases Europe @eurordis·

#ThrowbackThursday Seems like it was yesterday when we celebrated 👏 the outstanding achievements of our community.

Hold on. It was yesterday! 🥳 If you missed it or wish to remember the importance of the #EURORDISAwards, this is your chance! ✨

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Rare Diseases Europe @eurordis·

24 Feb

Thank you for being with us tonight! 🥰

We are pleased to see so many people connected to celebrate all the heroes who have shown their commitment to improving the quality of life for people with rare diseases.

See you next year at the Black Pearl Awards ... 2022 👋

Stay tuned!

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Simona Bellagambi @SimonaBellagam2·

24 Feb

Senza l'abito da cerimonia ma seguo il #BlackPearlAwards Gala. Il Presidente del Parlamento Europeo #DavidSassoli è con noi. #EURORDISAwards2021 #Uniamoleforze

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Rare Diseases Europe @eurordis·

24 Feb

Love knows no disease 💙

The sky is the limit when you have this unwavering, unbreakable and unparalleled fondness and devotion for your partner 🧑‍🤝‍🧑

Congratulations, Pavol Kulkovský, and thank you for sharing this beautiful moment!

... #RareDiseases #EURORDISAwards2021

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Kateřina Konečná@Konecna_K·

24 Feb

I'm proud and more then ever devoted to serve people living with rare diseases and work together with pacients organizations. Today I will celebrate and tomorrow I will try even harder. People with rare diseases deserve the best and I'm here to help them.
... #EURORDISAwards2021 https://twitter.com/Left_EU/status/1364571575303954432

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#ECRD2020

Raras pero Reales @RarasReales·

9 Feb

¿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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EMJInnovations @EMJInnovations·

4 Feb

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

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EMJ Microbiology & Infectious Diseases @EMJMicrobiology·

2 Feb

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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Raras pero Reales @RarasReales·

19 Jan