The World Orphan Drug Congress Europe is the largest and most established orphan drug & rare disease event worldwide. Meet over 2000 attendees, hear from 250 leading speakers, and connect with 130 exhibitors as we bring together experts from the start-to-finish of orphan drugs. From regulation and policy, to global pricing and gene therapy.
ERICA Booth is number 124 located in Patient Group Zone.
Programme available here
If you are a member of an ERN, patient group organization, charity or government (including public health bodies, HTAs, regulators), you are eligible for a free VIP pass. Apply now: www.terrapinn.com/WODC/ERICA
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ERICA WP4 Clinical Trial Support webinar
Thursday, April 11th From 13:00 to 14:00 CEST
Speakers
“Conect4children” (c4c) is a IMI2 project and a Dutch non-profit that provides services to academia and industry that accelerate the design and conduct of paediatric clinical research. This webinar introduces two of the services: support for clinical trials and education & training.
We invite you to learn about how these services can support your research and how you can inform the implementation of c4c for rare disease research.
Mark Turner, c4c
Chloe Bickerstaff,c4c
Francesca Rocchi, [...]
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ACT EU Training for non-commercial sponsors: Transitioning trials to CTIS
9 February 2024 10:00-13:00 CET
Location: Online/ European Medicines Agency, Amsterdam, the Netherlands, Live Broadcast
Event summary
This training event aims to support non-commercial sponsors of clinical trials in transitioning their clinical trials that are expected to continue after 30 January 2025 from the Clinical Trials Directive to the EU Clinical Trials Regulation (Regulation (EU) No 536/2014). Moreover, the event will provide useful training in preparing new clinical trials following the Clinical Trial Regulation (CTR).
From 31 January 2025 onwards only the CTR and its Delegated Acts will [...]
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To help the ERN community in understanding the process of translation and to support their collective ability to develop knowledge into patient benefit, a catalogue of current translational research services available to the rare diseases research community has been developed.
Now the latest version 23.04.2024 is available: Catalogue of Services
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Orphan Medicines Development – ask the European regulator
Thursday, 29 February 2024 Virtual meeting via WebEx / EMA, Amsterdam
The EMA’s Orphan Medicines Office is hosting an interactive webinar on Rare Disease Day on 29 February 2024, to answer questions that developers of products for rare diseases or researchers in this field might have on orphan designations and rare disease development. The webinar will feature:
short presentations on the background of orphan designation and the benefits it has brought to patients; a live question-and-answer session enabling participants to ask their questions on orphan medicines development to a panel of regulatory [...]
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The Joint Heads of Medicines Agencies (HMA)/European Medicines Agency (EMA) Multistakeholder workshop on Patient Registries will bring together representatives of registry holders, regulatory agencies, pharmaceutical companies, patients, healthcare professionals, academia, and health technology assessment bodies to address the following objectives:
Day 1 – 12 February afternoon: Discuss the
EMA qualification procedure for patient registries with the aim to clarify the benefits, identify current limitations, and propose measures to optimise the process; Day 2 – 13 February all day: Establish the value and enable the use of patient registries for regulatory decision-making by considering contexts of use for which registry [...]
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The European Conference on Rare Diseases & Orphan Products (ECRD) is the event that allows the dialogue and collaboration of over 1500 stakeholders in the rare disease community. The 12th edition coordinated by EURORDIS and co-organized by Orphanet will be celebrated next summer, from 15th to 16th May 2024.
The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe.
By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses [...]
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Join the first international drug repurposing conference “Bridging Boundaries: Innovating, Connecting & Reshaping Drug Repurposing”, #iDR24, co-organised by REMEDi4ALL ,Beacon and MeRIT on 6-7 March 2024 in Barcelona. REMEDi4ALL is Horizon Europe-funded project which aims at building a sustainable drug repurposing platform in Europe with an approach of co-creation amongst researchers, clinicians and patients.
In this global event, key opinion leaders from both the research and patient communities, funders, regulators and representatives from the private sector will participate to collectively advance innovative drug repurposing in Europe and beyond.
Among others rare disease patient organisation EURORDIS is hosting [...]
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REGISTRATION IS NOW OPEN here ONLINE REGISTRATION until 14 January 2024. Registration will remain open for the reserve list only until 4 February 2024.
The International Course “Training on strategies to foster solutions of undiagnosed rare disease cases” 13-15 March 2024 is part of a series of training activities proposed by the EJP RD. The Course is made up of 3 days training organized by ISS, Istituto Superiore di Sanità, Rome, Italy. The course will be only in person.
Several initiatives have been undertaken at national and international level for undiagnosed rare diseases aimed at identifying clinical pathways [...]
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The European Rare Disease Research Coordination and Support Action- ERICA and European Joint Programme of Rare Diseases (EJP RD)
Joint Conference took place 21st November 2023 in Amsterdam University Medical Centre.
Main topics:
Examples of Synergies between both projects (ERICA & EJP RD) Collaboration of ERNs and non-ERNs researchers Preparing the path to the European Rare Diseases Research Alliance (ERDERA)
View the full programme (, 172 KB).
Overview of all Presentations ERICA & EJP RD Joint Conference.
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