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.
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
Our friends at @GeneticAll_UK are conducting a survey to capture the experience of patients & carers affected by rare and undiagnosed conditions
Complete the survey here 👉 https://www.surveymonkey.co.uk/r/rareandundiagnosedpatientexperiencesurvey2020
💚We were at #ECRD2020
2️⃣ days of great interesting discussion to shape a better future for people living w a #raredisease
👀 out and ⬇️ our 2⃣ posters:
- CDG diagnosis https://bit.ly/2Xr5Mz4
- Patient centricity 4 therapeutic development ... (https://bit.ly/3fzgeLu)
Check out the poster & infographic illustrating the diagnostic odyssey many people affected by #RareDiseases experience. Created through the @eurordis -led Community Engagement Taskforce within the @Solve_RD project presented at #ECRD2020 & #eshg2020 ... 👉 http://ow.ly/5ukG50AnK4q
EMJ 5.2 2020 - European Medical Journal #RareDisease #ECRD2020 https://www.emjreviews.com/european-medical-journal/journal/emj-5-2-2020/?utm_source=newsletter_oncology&utm_medium=email&utm_campaign=_290720#.XyK4TShWflQ.twitter
EMJ 5.2 2020 - European Medical Journal #RareDisease #ECRD2020 https://www.emjreviews.com/european-medical-journal/journal/emj-5-2-2020/?utm_source=newsletter_oncology&utm_medium=email&utm_campaign=_290720#.XyK4TShWflQ.twitter
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
All posters from #ECRD2020 are now available online. Check the #Treatabolome poster presented by @antonioatalaia 👉 http://ow.ly/AOjP50AnGac
The Treatabolome will enhance visibility of #RareDisease specific treatments at the moment of diagnosis by ... integrating w/ existing tools.
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Co-organised by:
