The United Nations Political Forum on Sustainable Development (HLPF) is co-organising a High-Level Side Event titled “On the road towards COVID-19 recovery & delivery of the Sustainable Development Goals – Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority” along with the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS. The fully online event will […]
Read MoreAs one of the joint undertakings under
Read MoreAs one of the joint undertakings under Horizon Europe, a draft Strategic Research & Innovation Agenda (SRIA) for the Innovative Health Initiative (IHI) has been published on the European Commission (EC) website. IHI will build on the successes of and lessons learnt from the Innovative Medicines Initiative (IMI). The goal of IHI is to help create an EU-wide health research and innovation ecosystem that facilitates the translation of […]
Read MoreThe 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
Read MoreThe 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. […]
Read MoreIRDiRC 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 […]
Read MoreIRDiRC 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 […]
Read MoreDECIPHER, 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
Read MoreDECIPHER, 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 […]
Read MoreThe 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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