IRDiRC has recently accepted a new Recognized Resource, the Cellosaurus, a knowledge resource on cell lines aiming to describe all cell lines used in biomedical research. The Cellosaurus provides information for about 130,000 cell lines and 25% of these cell lines are established from rare disease patients. For each cell line the Cellosaurus provides a wealth of information, cross-references and literature citations. The Cellosaurus is available on the ExPASy server (https://web.expasy.org/cellosaurus/) and can be downloaded in a variety of formats.
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 take place on July 7th from 14.00 – 15.30 CET.
The Side-Event is a major milestone for the rare disease community at the United Nations. It will be an opportunity to discuss a proposed UN Resolution on Persons Living with a Rare Disease and their Families as well as support for the initiative. The call is supported by is a Core Group of Member States (Brazil, Spain, and Qatar).
Within the context of the Sustainable Development Goals (SDGs), supporters of the call urge the countries of the UN to address the needs of persons living with a rare disease as an opportunity to build more inclusive societies, realise the promise to “leave no one behind” expressed in Agenda 2030, and learn from the lessons of the COVID-19 pandemic.
More information and registration here: https://us02web.zoom.us/webinar/register/WN_06nqC4E0S_ifw75SoKQDiw
As 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 scientific knowledge into tangible innovations, with a total proposed budget of €2.4 billion.
The Commission welcomes feedback on the draft SRIA from members of the rare disease community. The draft SRIA will become a binding document of the IHI upon formal establishment and adoption by the Governing Board. Interested parties can send feedback by email: RTD-IHI [at] ec.europa.eu.
More information here: https://ec.europa.eu/info/research-and-innovation/funding/funding-opportunities/funding-programmes-and-open-calls/horizon-europe/european-partnerships-horizon-europe/candidates-european-partnerships-health_en (section titled “European Partnership for Innovative Health”)
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.
In this online event targeted towards the broad rare disease community, including research, academia, patient representatives, members of the investor community, rare disease companies and trade associations, the expert presenters and panellists will discuss a report with 14 policy proposals to improve the OMP innovation environment in Europe, present their recommendations, and discuss compelling ideas for the next decade of rare disease policies in Europe.
More information and registration here: https://events.euractiv.com/event/info/media-partnership-how-to-address-the-unmet-needs-of-rare-disease-patients-by-transforming-the-european-omp-landscape
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 achieving goal 2, “1000 new rare disease treatments by 2027.”
To best represent the worldwide rare diseases community in its full width and complement the current membership, the TSC has two openings for new members who are from the following regions: Africa, Asia, Australasia or South America. Interested candidates are invited to send their resume, bioskech and letter of motivation to scisec-irdirc[at]ejprarediseases.org before the 15th of June 2021.
As such, we are looking for rare disease experts from these regions with the following qualities:
- Expertise in medicines or medical devices (experience in Advanced Therapy Medicinal Products (ATMPs), or artificial intelligence and/ or machine learning as applied to medical research)
- Expertise from an industry, regulatory or Health Technology Appraisal fields
- Able to commit to monthly teleconferences, a yearly meeting and regular committee activities and email correspondence