congress – EJP RD – European Joint Programme on Rare Diseases https://www.ejprarediseases.org Wed, 31 Jan 2024 14:19:36 +0000 en-GB hourly 1 https://wordpress.org/?v=5.9.9 https://www.ejprarediseases.org/wp-content/uploads/2020/11/cropped-index-32x32.png congress – EJP RD – European Joint Programme on Rare Diseases https://www.ejprarediseases.org 32 32 International Congress on Rare Diseases and Orphan Drugs https://www.ejprarediseases.org/international-congress-on-rare-diseases-and-orphan-drugs/?utm_source=rss&utm_medium=rss&utm_campaign=international-congress-on-rare-diseases-and-orphan-drugs Wed, 31 Jan 2024 14:16:41 +0000 https://www.ejprarediseases.org/?p=18489 Save the Date for the International Congress on Rare Diseases and Orphan Drugs on February 29th, 2024 (Hybrid -Technopolis City of Athens Gasholder 1 – Auditorium “Miltiadis Evert”) & March 1st 2024, (Digital).

Registration is open here (early bird deadline: January 31st, 2024)

Don’t miss the unique opportunity to be part of a transformative event that is paving the way for advancements, collaborations, and hope in the realm of rare diseases organized by Rare Diseases Greece (RDG), member of EURORDIS-Rare Diseases Europe and Boussias Events following the World Rare Disease Day 2024.

Under the theme “Navigating the Uncharted: Advancements, Collaborations, and Hope in Rare Diseases”, the International Congress on Rare Diseases and Orphan Drugs aspires to stimulate dialogue and cooperation across all stakeholders – patient representatives, policymakers, clinicians, researchers, industry, payers and regulators – towards advancing a comprehensive rare disease strategy that promotes sustainability and equity within healthcare ecosystems.

]]> SAVE THE DATE: RE(ACT) Congress and IRDiRC Conference 2023 https://www.ejprarediseases.org/save-the-date-react-congress-and-irdirc-conference-2023/?utm_source=rss&utm_medium=rss&utm_campaign=save-the-date-react-congress-and-irdirc-conference-2023 Thu, 19 May 2022 13:24:15 +0000 https://www.ejprarediseases.org/?p=12547 EJP RD is pleased to announce that the next edition of the 7th RE(ACT) Congress and 5th IRDiRC Conference will be held in person in Berlin, Germany from March 15th – 18th, 2023.

The joint event “RE(ACT) Congress and IRDiRC Conference 2023” aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies. Patients and patient organizations committed to research will also be in attendance to share their experiences and perspectives.

The RE(ACT) Congress and IRDiRC Conference 2023 represents an exciting program with outstanding speakers and an in-person event with multiple ways of networking!

We look forward to welcoming you to Berlin in March 2023. Registration open at: https://www.react-congress.org/attendees/registration-2/


On behalf of the organizing committee:
Dr. Olivier Menzel, Chairman, and founder of BLACKSWAN Foundation
Dr. Daria Julkowska, EJP RD Coordinator
Dr. David Pearce, IRDiRC Consortium Assembly Chair

]]> Dates announced for Innovation Bootcamp in Rare Diseases 2022 (IBRD2022) https://www.ejprarediseases.org/dates-announced-for-innovation-bootcamp-in-rare-diseases/?utm_source=rss&utm_medium=rss&utm_campaign=dates-announced-for-innovation-bootcamp-in-rare-diseases Thu, 17 Feb 2022 16:55:57 +0000 https://www.ejprarediseases.org/?p=11184 The dates for the 2022 edition of the Innovation Bootcamp in Rare Diseases (IBRD2022), sponsored by Congress Care, have been announced.

The event is targeted towards all professionals involved in the prevention, treatment and diagnosis of rare diseases and orphan drug research and development, including researchers, clinicians, pharma, policy makers and patient representatives.

This in-person event will take place in Brussels, Belgium on October 11th.

The program includes the following sessions:

  • Tackling delay in diagnostics
  • Newborn screening & improvement of prevention
  • The impact of patient organisations
  • Pricing of Orphan drugs and true cost of illness
  • Regulatory & access challenges in orphan drugs

More information here: https://congresscare.eventsair.com/innovation-bootcamp-in-rare-diseases-ibrd22/

]]> 1st World Congress on Rare Skin Diseases to be organised in Paris https://www.ejprarediseases.org/1st-world-congress-on-rare-skin-diseases-to-be-organised-in-paris/?utm_source=rss&utm_medium=rss&utm_campaign=1st-world-congress-on-rare-skin-diseases-to-be-organised-in-paris Fri, 04 Feb 2022 17:05:28 +0000 https://www.ejprarediseases.org/?p=11065 Organized by the Rare Skin Diseases Network of the René Touraine Foundation, in association with ERN SKIN, the 1st World Congress on Rare Skin Diseases is an event that brings together the best experts, patient representatives and industry around the same cause: improving the care of patients with rare skin diseases.

This in-person event will take place in Paris, France over three days from June 7th – 9th.

The program includes the following:

  • 4 plenary sessions discussing on multidisciplinary management of rare disorders, clinical trials, orphan drugs, active research, and rising stars
  • 28 parallel workshops on the various diseases and topics (genodermatoses, complex vascular anomalies, auto-immune bullous diseases, autoinflammatory disease, hidradenitis suppurativa, neurofibromatosis, severe cutaneous drug reactions, rare skin cancers, hair abnormalities, pigmentation disorders, puzzling histological cases, social aspects of rare skin diseases, etc.)
  • 1 poster session (there will be a call for posters)
  • 2 training sessions: “Juniors challenge Seniors!” and a dedicated training session for French-speaking countries.

More information and registration here: https://wcrsd2022.com/en/?idU=1

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