Latest News

A new scientific paper published in the European Journal of Human Genetics has confirmed that the number of people worldwide living with a rare disease is estimated at 300 million. This paper is co-authored by Orphanet (coordinated by INSERM, the French National Institute of Health and Medical Research), EURORDIS – Rare Diseases Europe and Orphanet […]

Join us at the APARDO Summit 2019: Regional Collaborations for Global Change Date: 19 – 21 October Location: Taipei, Taiwan Rare Diseases International is pleased to be a co-organiser in this event alongside the Asia Pacific Alliance of Rare Disease Organisations. The event aims to help patient advocates representing national and regional patient-centric organizations effectively […]

23 September 2019, New York – Today at a high-level meeting at the United Nations (UN) headquarters, UN Member States adopted a political declaration on universal health coverage (UHC) that includes mention of rare diseases. This marks a hugely significant milestone for the rare disease community, with rare diseases being included for the first time within […]

The United Nations Office of the High Commissioner for Human Rights (OHCHR) has made reference to persons living with a rare disease within its recently published annual report to the UN Economic and Social Council (ECOSOC). The 2019 report focuses on the topic of Universal Health Coverage (UHC), and looks at how the human rights […]

23 May 2019 marked a historic day for the rare diseases movement with rare diseases being featured on the agenda of the World Health Assembly (WHA) for the first time. Rare Diseases International (RDI) is proud to have contributed towards the formal and informal events which shone a spotlight on the importance of including rare […]

We want to help spread the word about our members’ events. Share the details of your events with us and we can add them to the Member Events section on the RDI website, as well as promoting them via our monthly newsletter and twitter. What kind of events can we promote? We can promote any […]

You are invited to attend the Rare Diseases International side event to the World Health Organization 72nd World Health Assembly. Event: RDI WHO 72 WHA Side Event – Universal Health Coverage: Including Rare Diseases to leave no one behind Date: Thursday 23 May 2019NEW Time: 18:00 – 20:00 Location: International Red Cross and Red Crescent Museum, […]

On Monday 18 March 2019, Durhane Wong-Rieger, Chair of the Council of Rare Diseases International and Yann Le Cam, Chief Executive Officer of EURORDIS-Rare Diseases Europe, met with Dr Tedros, Director-General of the World Health Organization (WHO), in Geneva to discuss a shared vision for the more than 300 million people living with a rare […]

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.

            Rare Diseases International Policy Event The Right to Health: The Rare Disease Perspective 10 February 2017, 09.30 – 18.00, Campus Biotech, Chemin des Mines 9, 1202 Geneva, Switzerland   ‘No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of […]

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.