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WCRSD 2024: Call for abstracts postponed to January 15th, 2024
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We are pleased share with you and to invite you to submit your abstract to the World Congress on Rare Skin Diseases (WCRSD) 2024.
We have postponed the submission date to January 15th, 2024.
 Don’t miss this opportunity and share with us your abstract!
Abstracts must be submitted exclusively via the online platform available here.
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You can find all the details about the abstract format, content, review, contacts and more here.
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Upcoming webinars
Invitation to ERN-Skin Webinar about the ERDERA proposal
16th January 2024, 12:30 – 1:30 pm CET
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The European Rare Diseases Research Alliance (ERDERA) proposal was submitted under Horizon Europe on September 19th, 2023 for funding under the EU Research & Innovation funding programme Horizon Europe as a co-funded partnership between the European Commission, European Member States, and beyond.
Yanis Mimouni or/and Daria Julkowska, from the European Joint Programme on Rare Diseases will present about this proposal.
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Invitation to ERN-Skin Webinar EBStatMax
30th January 2024, 1:00 pm – 2:00 pm CET
EBStatMax is a clinical trials methodology demonstration project co-funded by the European Joint Programme on Rare Diseases (EJP-RD).
Presented by Prof. Johann Bauer, University Hospital Salzburg, Austria
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A quick update on the ERRAS project, the ERN-Skin European registry for ERN-Skin members
Technical aspect: the developer is developing in test environment a new interface that will allow each HCP to have access to its own data only. If all goes well, the registry should be ready for you to use within 3 months.
– Legal documents:
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Valerie Déprez will contact all ERN-Skin members, one after the other, to give you the documents that need to be approved by your hospital.
At the same time it will be important to confirm the existing registries you may be using, which tool they are on, how many patients are in them.
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ERN-Skin Patient Survey: HCP Representatives share it with your
ERN-Skin patients
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We invite all ERN-Skin HCP Representatives and their teams to share the patient survey with their ERN-Skin patients.
The aim of this survey is to measure the level of patient satisfaction after consultation in an ERN-Skin centre, in order to improve their quality of care and performance.
The questionnaire has 26 items and it is divided in 4 main sections:
- General information on the patient
- Consultation and follow-up (19 questions)
- Treatment prescription and therapeutic research (5 questions)
- Global satisfaction (2 questions)
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A short blank section is available at the end of the questionnaire to add any comments. This survey has been elaborated by SKIN ePAG advocates and so far it is available in 14 languages!
Click here to access the link to the online questionnaires, as well as the printable version* of the questionnaires.
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Other events
EURORDIS – 12th European Conference on Rare Diseases (ECRD)
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Mai 15th-16th, Brussels & online!
Eurordis will organize its 12th European Conference on Rare Diseases (ECRD) from May 15th to 16th, 2024 in Brussels and online.
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The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1,500 advocates, experts, policymakers and industry professionals from the rare disease community. Join us in identifying key priorities, uniting stakeholders from across Europe and beyond, to forge a unified approach for the next EU legislative cycle.
More information here
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Stay tuned for more!
Connect with us on social media!
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