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:

European Commissioner Helena Dalli plenary speech

Dr Gareth Baynam "Life languages and red flags in the red sand"

You can also preview the following pre-recorded sessions from Theme 2 and 4: Getting our rights ‘right’: An international framework for rare diseases (Theme 2)  and  Orphan Drug Development Guidebook (Theme 4)

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.

#ECRD2020

We are looking forward to finding out who will be the next rare disease stars of the #EURORDISAwards2021 !

📱🗳️Nominate your star scientist, patient advocate or volunteer here: https://blackpearl.eurordis.org/nominate/

The @eurordis Winter School is open to patient representatives who want to deepen their understanding of how pre-clinical research translates into real benefits for rare disease patients.

Applications are now open, find out more below:
... http://ow.ly/fjxq50APZKy

A glimpse from the other side of the Atlantic. This is how the pandemic has affected Gabby👩, who is 25 & is living with Huntington disease in the USA. The rare disease community is a vulnerable population during the #Covid19 pandemic
... https://www.inquirer.com/health/coronavirus/young-adult-rare-disease-chronic-illness-covid-20200722.html

@RareDiseases

Europe cannot wait for the next pandemic for more EU action 🇪🇺 on health. The time to invest in a healthy future is now.

📝Read the #EU4Health statement we have signed: ... https://eu4health.eu/eu-health-organisations-react-to-cuts-in-eu-health-programme/

#SaveEU4Health @eupatientsforum

[email protected] has published a guide reviewed by @Durhane, Chair of the @rarediseasesint Council, outlining how to build cross-border genomic data consortia, which demonstrates that sharing of rare disease data across borders is a crucial step towards diagnosis

... 👉https://www.weforum.org/reports/sharing-sensitive-health-data-in-a-federated-data-consortium-model-an-eight-step-guide

📄Now you can access a new paper on #PatientEngagement in research co-authored by @ROB_CAMP, EURORDIS Patient Engagement Manager alongside EURORDIS volunteers Russell Wheeler, Rainald von Gizycki & 10 others

Read the study here 👇

... https://www.ispor.org/publications/journals/value-in-health/abstract/Volume-23--Issue-6/Defining-Patient-Engagement-in-Research--Results-of-a-Systematic-Review-and-Analysis--Report-of-the-ISPOR-Patient-Centered-Special-Interest-Group

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With the support of

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Full partners

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