News

IRDiRC in the NEWS: Dr. Lucia Monaco’s interview with VITA

New article on IRDiRC has just been released today: “Malattie rare: «e ora non dimentichiamo la ricerca di base»”! It is an interview, IRDiRC chair, Dr. Lucia Monaco, IRDiRC chair, had with the Italian magazine VITA. Dr. Monaco pointed out the importance of creating solid networks across different stakeholders and their active involvement in research, […]

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IRDiRC joins the International Women’s Day campaign

This year, IRDiRC joins the International Women Day (#IWD2020) together with EU Commission and many other organizations and groups worldwide. Why? Because still “throughout the European Union (EU), not enough women are attracted to careers in information, science and technology. While women are better represented at university level – more than 25 % of graduates […]

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The RE(ACT) Congress and IRDiRC Conference

The RE(ACT) Congress and IRDiRC Conference has been postponed. Due to a situation of “force majeure” and international travel policies associated with the COVID-19 outbreak, the congress is postponed to the first months in 2021. Dates will be communicated as soon as possible.We apologize for this inconvenience.

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World Birth Defects Day

Today is the World Birth Defect Day and IRDiRC is happy to support it by raising awareness together with the other hundreds organizations worldwide. There are many types of birth defects, also known as congenital anomalies, congenital disorders or congenital condition and today we celebrate them all in just one collective voice (#manybirthdefects1voice).  Today, MotherToBaby […]

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EURORDIS Black Pearl Awards 2020: IRDiRC is there!

The 9th edition of the Eurordis Black Pearl Awards event is taking place today in Brussels. Irdirc for the second year in a row, will be there with Prof. Annemieke Aartsma-Rus who is the recipient of the Scientific Award and with Dr. Daria Julkowska with the European Rare Disease Leadership Award. Congrats to both of them for […]

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New IRDiRC Newsletter has been just released!

The first edition of the IRDiRC Newsletter in 2020 is out! IRDiRC celebrates the Rare Disease community with messages from Dr. David Pearce – Vice-Chair and Dr. Lucia Monaco – Chair of the consortium that official announces the launch of the IRDiRC Roadmap 2020. Furthermore, in this edition you will find a New Recognized Resource, […]

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New IRDiRC Roadmap 2020

IRDiRC Roadmap 2020 has been presented by Dr. Lucia Monaco, chair of the consortium, in the Jan – Feb 2020 newsletter recently released. IRDiRC has created #4 new actions to tackle relevant and urgent matters that are impacting directly the lives of people with rare diseases: Chrysalis Project: Identify key criteria that would make rare […]

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New IRDiRC Recognized Resource: hPSCreg

IRDiRC has recently accepted a new Recognized Resources, the hPSCreg, a database that provides an overview of human pluripotent stem cell lines (hPSC) lines available for research. The Registry contains some hPSC lines from donors with rare diseases, it is freely accessible that allows searching for cell lines and for information available about these cell […]

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IRDIRC mentioned on the EU document “Orientations towards the first Strategic Plan for Horizon Europe”

IRDiRC has been mentioned on the official “Orientation paper” document prepared by the EU that presents suggestions for key impacts to be targeted in the first four years of Horizon Europe (2021-2024), including the Health cluster for Rare Diseases under the European Partnerships umbrella (pg. 43). “Rare Diseases”: This research and innovation partnership would aim […]

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New IRDiRC PACC members

Welcome to Rare Disease Ghana Initiative (RDGI) and Iberoamerican Alliance for Rare Diseases (ALIBER) to the IRDiRC – PACC committee! The RDGI is represented by Samuel Agyei Wiafe, Founder and Executive Director and ALIBER by Alba Ancochea as its Advocacy Advisor. Are you part of a patient organization? Do you share the IRDiRC vision and […]

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