Latest News

Patient leaders from around the world meet at 4th RDI Annual Meeting in Vienna

30 May 2018

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 […]

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Rare diseases mentioned for the first time at WHO 71st World Health Assembly

22 May 2018

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.

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Panel discussion on rare diseases in asia and africa

Patient leaders from around the world meet at 3rd RDI Annual Meeting in Barcelona

05 June 2017

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.

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The right to health – making rare diseases a global health priority

10 February 2017

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.

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Solidarity with Iranian patients

05 November 2016

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.

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Rare Diseases Conference 2016 featuring the 11th ICORD Annual Meeting

23 October 2016

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.

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Statement from UNDP Administrator Helen Clark to the ICORD Meeting

21 October 2016

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.

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RDI members at Membership Meeting in 2016 in Edinburgh

2nd Annual RDI Membership Meeting held in Edinburgh

26 May 2016

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.

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RDI members at inaugural meeting Madrid 2015

Rare Diseases International launched at inaugural members’ meeting

29 May 2015

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.

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.European Conference on Rare Diseases An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases