News

Orphan Drug Expert Group Webinar: Addressing the unmet needs of rare disease patients

The European Expert Group on Orphan Drug Incentives (OD Expert Group), in collaboration with media partner EURACTIV, is organising a webinar on how to address the unmet needs of rare disease patients by transforming the European Orphan Medicinal Products (OMP) landscape. Dr Lucia Monaco, Chair of the IRDiRC Consortium Assembly, will participate as an expert presenter. The webinar will take place on June 11th from 14.30

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Orphan Drug Expert Group Webinar: Addressing the unmet needs of rare disease patients

The European Expert Group on Orphan Drug Incentives (OD Expert Group), in collaboration with media partner EURACTIV, is organising a webinar on how to address the unmet needs of rare disease patients by transforming the European Orphan Medicinal Products (OMP) landscape. Dr Lucia Monaco, Chair of the IRDiRC Consortium Assembly, will participate as an expert presenter. The webinar will take place on June 11th from 14.30 – 16.00 CET. […]

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Nomination Call: Therapies Scientific Committee

IRDiRC has three Scientific Committees, one each for Diagnostics, Therapies and Interdisciplinary aspects of rare diseases research. The Therapies Scientific Committee (TSC) is a multi-stakeholder, multi-disciplinary group of experts in medical research and therapy development in rare diseases. Specifically, the TSC is devoted to pursuing the therapeutic development of IRDiRC, supporting the rare diseases research community in […]

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Nomination Call: Therapies Scientific Committee

IRDiRC has three Scientific Committees, one each for Diagnostics, Therapies and Interdisciplinary aspects of rare diseases research. The Therapies Scientific Committee (TSC) is a multi-stakeholder, multi-disciplinary group of experts in medical research and therapy development in rare diseases. Specifically, the TSC is devoted to pursuing the therapeutic development of IRDiRC, supporting the rare diseases research community in […]

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Resource Webinar: DECIPHER

DECIPHER, an IRDiRC-recognised resource and an associated partner of EJP RD, is organising a webinar to introduce DECIPHER, an online data-sharing platform facilitating the visualisation and contextualisation of rare disease genomic and phenotypic relationships, to enable diagnosis and discovery.  The webinar will take place on May 27, 2021 from 15.00

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Resource Webinar: DECIPHER

DECIPHER, an IRDiRC-recognised resource and an associated partner of EJP RD, is organising a webinar to introduce DECIPHER, an online data-sharing platform facilitating the visualisation and contextualisation of rare disease genomic and phenotypic relationships, to enable diagnosis and discovery.  The webinar will take place on May 27, 2021 from 15.00 – 16.00 CET. The featured speaker is Julia Foreman, and she will […]

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Council of Europe Initiative: Children rights participation in decision making in the biomedical field

The UN Convention on the Rights of the Child and other Human rights instruments, recognising that children are rights-holders with a progressively evolving ability to make their own decisions, endorsed changes in the general perception of the autonomy and protection of children regarding their capacity to participate in decision-making. However, on matters concerning their health, […]

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Council of Europe Initiative: Children rights participation in decision making in the biomedical field

The UN Convention on the Rights of the Child and other Human rights instruments, recognising that children are rights-holders with a progressively evolving ability to make their own decisions, endorsed changes in the general perception of the autonomy and protection of children regarding their capacity to participate in decision-making. However, on matters concerning their health, […]

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Medics4RareDiseases online interactive e-learning platform

Medics4RareDiseases has launched its online, interactive e-learning platform dedicated to teaching medics the fundamentals of rare disease and help them manage both their undiagnosed and diagnosed patients. Sign up here to access M4RD courses

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