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WCRSD: 12-13-14 June 2024
Discover the preliminary program
The preliminary program is now available on the WCRSD website.
Have a look at the plenary sessions, workshops and symposiums that will take place. Click here
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WCRSD GRANT: Apply now!
This second edition of the World Congress on Rare Skin Diseases is supported by the Fondation Isabelle Decazes-de Noüe, which will be offering five educational grants.
You can apply to the scholarships if:
- You are a dermatologist or a specialist
- You are 40 under years old
- You have a special interest in rare skin diseases predisposing to cancer
- You work in Egypt, Lebanon, Palestine, or Tunisia
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Upcoming webinars
AIBD ERN-Skin Webinar
27th February 2024, 1:00 – 2:00 pm CET
AutoImmune Bullous Diseases (AIBD) thematic group is organizing a webinar on “Long-Term Sustained Complete Remission Off Corticosteroid Therapy in Patients with Pemphigus Who Received Rituximab as First-Line Therapy: Results From a Median 7-Year Follow-up Study of the Ritux 3 Trial”.
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- It is presented by Prof. Pascal Joly, from Centre de Référence Maladies Bulleuses Auto-immunes, Clinique dermatologique, CHU de Rouen, Rouen France.
- And chaired by Prof. Branka Marinović, from Zagreb Clinical Hospital Center, Zagreb, Croatia.
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For our Partners: ERRAS Registry
The documents required to share your patients data on the ERRAS registry are now ready: DSA (Data Sharing Agreement) including the DPIA (Data Privacy Impact Assessment), the DAP (Data Access Policy) and the Matrix of responsibilities of the Joint Controllers.
A few hospitals have received the required documents to be addressed to your legal / ethics committees for validation and signature. This is the necessary step to be allowed to deposit your patient health data on the ERRAS registry.
So please watch out your email box for those.
Regarding the ICF (Informed Consent Form), a matrix translatted into different European languages was shared before, and was meanwhile made available on the ERN-Skin website:
👉 ERN-Skin website > transversal activities > ERRAS registry > Legal documents, or follow the link, click here
You can ask your ethical committee if the ICF you are already using needs to be updated or not, and you can also check whether the informed consents already signed by your patients can be used for ERRAS, therefore avoiding to ask for a new patient signature.
👉 If you have any questions, you can revert back to Valérie: valerie.deprez@aphp.fr
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Other related news
Rare Disease Day 2024 is coming up on February 29th!
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Rare Disease Day Rare Disease Day is a globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
- It was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners.
- Illuminate the world for rare diseases and share your colours to support the 300 million people globally living with rare conditions.
👉 Check out all the material that Rare Disease Day have prepared, click here
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Publication: IRDiRC paper, “Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community”
The latest IRDiRC paper, “Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community” has been published in Frontiers in Medicine.
This open-access publication, reflecting the collaborative efforts of the IRDiRC Drug Repurposing Task Force and the IRDiRC Therapies Scientific Committee over the past 1.5 years, is a significant milestone in advancing drug repurposing for rare diseases.
👉 To access the publication click here
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EJP RD Final Conference – from May 27th to May 28th, 2024 in Bari, Italy
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The EJP RD Final Conference is scheduled to take place from May 27th to May 28th, 2024 in Bari, Italy, this conference is set to bring together leading experts, professionals, and enthusiasts from around the world.
Please note: the hybrid event is open in person only to invited people. The event is open for all online.
Event Highlights:
- Dates: Monday, May 27 – Tuesday, May 28, 2024
- Venue: Hotel Excelsior Bari, Via G. Petroni, 15, Bari / Puglia, Italy
- Registration deadline: March 31st, 2024 – Registration is open here.
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👉 Agenda Coming Soon: Stay tuned as EJP RD prepares to unveil the detailed agenda, promising a comprehensive exploration of the impact of EJP RD. More information.
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Stay tuned for more!
Connect with us on social media!
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