News

ECRD will take place ONLINE on 14-15 May (more information) The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the […]

IRDiRC has created a new section on its Resources and Recommendations in order to provide additional knowledge on rare diseases from a different perspective, the Social and Humanities Sciences. The first two articles have been recently published on undiagnosed and team work: Capturing Team Dynamics in the Wild: The Communication Analysis Tool by Klonek et al., […]

IRDiRC is interested at hearing from you, in the frame of your own engagement in Rare Diseases with COVID-19 crisis: How it is affecting your work/practice How it is redirecting your activities and priorities What measures are being taken by you/your organizations What solutions you envisage What you feel IRDiRC could do for and with […]

Dear All, While the COVID-19 pandemic is spreading through the world, we wish to send a message to the IRDiRC community and express our nearness and encouragement to you all.The impact of COVID-19 outbreak on rare disease patients cannot be underestimated; not only their condition makes them frailer if infected, but also the exceptional burden […]

New interview of the IRDiRC chair, Dr Lucia Monaco recently had with ALS News Today. COVID-19 is impacting the daily lives of every person in the planet and it is also changing the research field, however Dr. Monaco  remains confident that IRDiRC will see the approval of 1,000 new rare disease therapies by 2027 as […]

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 […]

You 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 […]

IRDiRC 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 […]

We 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 […]

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, […]