The 11th International Conference on Rare Diseases and Orphan Drugs (ICORD), South Africa, included the Africa-Rare initiative launch and facilitated multi-stakeholder engagement in the challenges facing, and opportunities for, Africans living with rare diseases. The following ICORD Global Call to Action, developed in collaboration with the International Rare Diseases Research Consortium, synthesizes the outcomes of the […]
Read MoreYou are not alone as we all are one! The Indian Organisation for Rare Diseases (IORD) ‘Raising the Awareness: Prevention of Rare Diseases’ conference in Hyderabad, on the World Rare Disease Day 2020 saw the participation of different stakeholders. While inaugurating the IORD’s conference Eatela Rajender, Minister of Medical & Health and Family Welfare, Telangana […]
Read MoreIRDiRC has celebrated the Rare Disease Day with the release of Dr. Lucia Monaco interview with Horizon Magazine. A precious opportunity to make a stand on where we are in rare disease research and the achievements reached so far to end the “diagnostic odyssey” thanks to the strong commitment of IRDiRC members and the constant […]
Read MoreWe need a global approach to diagnose and treat rare diseases, according to a new World Economic Forum paper, “Global Access for Solving Rare Disease: A Health Economics Value Framework”. The paper written by health economists from the UK, Australia, Canada and the US, proposes the first global framework illuminating the potential economic benefits of […]
Read MoreNew 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, […]
Read MoreThis 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 […]
Read MoreThe 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.
Read MoreToday 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 […]
Read MoreThe 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 […]
Read MoreThe 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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