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On Thursday 21 February 2019, over 100 participants from the international NGO community, UN agencies, national governments, academic institutions, the private sector and the rare disease community came together at the United Nations (UN) in New York for the Rare Disease Day Policy Event (the Second High-Level Event of the NGO Committee for Rare Diseases). Organised […]

Agenda List of participants Photos Presentations Recordings The 4th RDI Annual Meeting took place on May 10th in Vienna, Austria, back to back to the European Conference on Rare Diseases and Orphan Medicinal Products (ECRD 2018). Delegates from 33 member organisations attended the first part of the meeting, which was reserved to members only. One […]

Paloma Tejada, Director of Rare Diseases International (RDI), will be delivering an official statement at the World Health Assembly of the World Health Organisation (WHO) in Geneva (Monday 21 to Friday 26 May). The statement is the product of a joint collaboration between a number of organisations holding the status of ‘special relations with the WHO’ (Thalassaemia International Federation, World Federation of Hemophilia, International Alliance of Patients’ Organizations and March of Dimes) and the umbrella organisations that are members of the NGO Committee for Rare Diseases.

The RDI Membership Meeting 2017 Barcelona (3rd Annual Meeting) was held on June 4th, 2017 in Castelldefels, Barcelona, Spain. Over 50 participants from 23 countries were able to network with patient advocates from around the world, learn more about recent developments in international rare disease advocacy and receive information to become further involved in RDI activities.

10 February 2017, Geneva – A-first-of-its-kind event takes place today in Geneva to bring together international experts in the fields of public health, human rights, scientific research, patient advocacy and the health industry to discuss why and how rare diseases should be part of the global health agenda.

EURORDIS-Rare Diseases Europe has recently established a partnership with the Rare Disease Foundation of Iran, a non-profit and non-governmental institution that provides services for rare disease patients and their community in Iran.

The Rare Diseases Conference that took place in October 2016 provided a global forum for all stakeholders within the rare diseases field to participate in open discussion, enhance models of best practice and share specialist knowledge around rare diseases and orphan drugs.

ICORD is very pleased to announce this statement on rare diseases and the development agenda, presented by Helen Clark, Administrator of the United Nations Development Programme.

RDI’s Annual Meeting was held on May 25th, 2016 – the day before and in the same premises as the European Conference on Rare Diseases & Orphan Products (ECRD 2016) in Edinburgh, Scotland.

The first annual meeting of RDI took place in May 28, 2015 in Madrid, Spain, alongside the EURORDIS Membership Meeting. Over 60 patient representatives from 30 countries gathered for the official launch and inaugural meeting.