Latest News

The General Assembly and Membership Meeting took place on 18 May 2020 and brought together 54 patient representatives from RDI member organisations to adopt RDI’s Work Programme for 2020. See the Action Plan and Budget for 2020 as well as the Activity Report and Financial Report for 2019 below. 2020-2021 Action Plan and Budget 2019 […]

The RDI Global Meeting is part of the RDI Annual Meeting calendar of events. Over 180 stakeholders from 48 countries including patient organisations, industry, academia, research, government as well as philanthropic organisations joined the call to hear about the actions putting rare diseases on the global health agenda and how they too can get involved in RDI’s […]

Rare Diseases International’s event marking the occasion of Rare Disease Day was opened by an enthusiastic crowd in Geneva on 25 February 2020. “Rare Diseases, Leaving no one Behind” – a photo expo honouring life with a rare disease Hosted at the United Nations on the margins of the 43rd Session of the Human Rights […]

The RDI Annual Meeting is an exceptional forum for patient advocates and other stakeholders to hear about the latest actions putting rare diseases on the global health agenda and understand how they too can get involved. To protect the health and safety of everyone involved and to support efforts to curb the propagation of COVID-19, […]

Rare Diseases International has signed an agreement to collaborate with the World Health Organization (WHO). The agreement aims to strengthen health systems’ capacity to address rare disease and shape international rare disease policy. In the first year, activities will focus on harmonising the way rare diseases are defined internationally and on laying the ground for […]

RDI co-organised with the International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) a Round Table on access for rare disease therapies in lower and middle-income country settings. The meeting, which was held at the IUCC in Geneva on December 4th 2019, brought together 15 patient representatives from RDI’s network and 14 company representatives from the […]

51 attendees from 17 countries and 19 member organisations took part in the recent Asia Pacific Alliance of Rare Disease Organizations (APARDO) summit in Taipei, Taiwan. The event, supported by Rare Diseases International, saw attendees actively engaged in discussions on various topics from amplifying patient voices to multi-stakeholder collaboration, to using the APEC Rare Disease […]

Paloma Tejada, Director, Rare Diseases International (RDI), attended the recent ‘Rare Diseases: A global challenge, a holistic challenge’ conference in Burgos, Spain, where she shared with attendees the global advocacy actions being undertaken on behalf of the rare disease community with the World Health Organization and the United Nations. As part of a round table […]

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.