EURORDIS press releases

Takeda, Microsoft and EURORDIS release report with action plan to help rare disease community shorten the diagnostic odyssey

20 February 2019

The Global Commission to End the Diagnostic Odyssey for Children, co-chaired by Takeda, Microsoft and EURORDIS, today announced its actionable recommendations in a report to address the barriers to diagnosis for people living with a rare disease.

Show Your Rare for Rare Disease Day 2019

1 February 2019

The countdown has begun to Rare Disease Day 2019 on 28 February. People around the world are joining the global movement for rare diseases by taking part in the #ShowYourRare campaign, holding events and raising awareness.

EURORDIS signs memorandum of understanding with the European Connected Health Alliance

29 November 2018

EURORDIS-Rare Diseases Europe and European Connected Health Alliance (ECHAlliance) announce a long-term strategic partnership to develop awareness on rare diseases, to promote initiatives aiming at accelerating innovation to improve access to information, quality diagnosis, treatment and multidisciplinary care and research for rare diseases.

Stars of the rare disease community recognised at 2019 EURORDIS Black Pearl Awards Ceremony

12 February 2019

EURORDIS-Rare Diseases Europe celebrates the recipients of the 2019 EURORDIS Black Pearl Awards.

EURORDIS regrets missed opportunity to engage patients in EU cooperation on health technology assessment

3 October 2018

The European Parliament (EP) today adopted the Regulation on EU cooperation on health technology assessment (HTA) with a majority of 576 votes in favor to 56 against and 41 abstentions. EURORDIS-Rare Diseases Europe congratulates the EP and the Rapporteur, MEP Soledad Cabezón Ruiz, for today’s vote. However, MEPs rejected amendments supported by EURORDIS to ensure patients’ adequate participation in the EU HTA Coordination Group (as full members) and in joint HTA work.

EURORDIS calls on MEPs to support active participation of patients in European cooperation on health technology assessment 

1 October 2018

Ahead of the upcoming European Parliamentary plenary session, EURORDIS-Rare Diseases Europe is calling on MEPs to support amendments to the Regulation on EU cooperation on health technology assessment (HTA) so that the legislation: (i) Guarantees adequate participation of patients in EU HTA cooperation (ii) Avoids unnecessary bureaucratic burden and provides for the creation of an efficient and quick HTA procedure at the European level. 

Rare Diseases International, the global voice of rare disease patients, votes to become legally independent

12 May 2018

At the 2018 Rare Diseases International (RDI) Annual Meeting that took place in Vienna this week, members of RDI voted to become incorporated as a legally independent organisation.

EURORDIS calls for new EU rare disease policy framework at ECRD 2018 Vienna

11 May 2018

On the opening day of the European Conference on Rare Diseases & Orphan Products 2018 Vienna (ECRD), EURORDIS-Rare Diseases Europe, an alliance of nearly 800 rare disease patient groups and organiser of the conference, is calling for a new EU policy framework and strong drive from the EU institutions in the area of rare diseases.

EURORDIS calls on European Commission to secure UK Healthcare Providers’ post-Brexit involvement in European Reference Networks

16 February 2018

EURORDIS-Rare Disease Europe calls on the European Commission to secure the continuous and sustained involvement of UK healthcare providers as members of the newly established European Reference Networks (ERNs) in the forthcoming Brexit negotiations with the UK government.

Rare disease community welcomes proposal for future European cooperation on Health Technology Assessment

31 January 2018

EURORDIS-Rare Diseases Europe calls on the European Parliament and Member States to adopt the European Commission’s (EC) proposal, published today, for a future European cooperation on Health Technology Assessment (HTA).

Out now - Rare Disease Day 2018 video!

29 January 2018

The official Rare Disease Day 2018 video launches today and is already available in 24 languages, kicking off the international patient-led movement that puts rare diseases in the spotlight.

Announcement: Winners of the EURORDIS Black Pearl Awards 2018

15 January 2018

EURORDIS-Rare Diseases Europe announces the winners of the EURORDIS Black Pearl Awards 2018.

New global survey to collect views of rare disease community on sharing of patients’ health information

22 December 2017

Rare Barometer Voices today launches a new survey to collect the experiences and views of rare disease patients, families and carers on how, with whom and for what purpose they want to share their health information. The survey is available in 23 languages and open to participants around the world. 

Rare disease community calls for radical change to improve patients’ access to medicines

6 December 2017

EURORDIS-Rare Diseases Europe and its over 700 member patient organisations today launch a new position paper calling for urgent, radical change to ensure patients’ full and fast access to rare disease therapies in Europe. Read the paper at

Launch of first network of Parliamentary Advocates for Rare Diseases

17 October 2017

EURORDIS is leading the launch of the new network with the aim of bringing together members of the European and national parliaments to ensure strong international and local action, shape political input for current and future legislation and integrate rare diseases into all relevant policies at all levels.

Rare Barometer Voices goes global!

1 September 2017

Rare Barometer Voices, the EURORDIS survey tool that collects the opinions of rare disease patients, families and carers, is now open to participants around the world. Formerly available to participants in Europe, Rare Barometer Voices is now available in all countries. Surveys are conducted in 23 languages.

Health ministers strengthen European collaboration on rare diseases

16 June 2017

EURORDIS-Rare Diseases Europe welcomes EU Council conclusions on Member State cooperation between health systems and calls for concrete next step to improve patients’ access to innovative medicines and specialised healthcare

3,000 rare disease patients & carers voice difficulties in balancing care & life

19 May 2017

The first Europe-wide survey on the social impact of rare diseases has revealed  that rare diseases have a serious  impact on everyday life for over 80% of patients and families.

New proposals to improve rare disease patients’ access to medicines through better Compassionate Use Programmes

26 April 2017

EURORDIS-Rare Diseases Europe today publishes a new position on compassionate use, calling for the adoption of measures to revolutionise patients’ access to new medicines through Compassionate Use Programmes (CUP).

European Commission’s DG SANTE wins EU Ombudsman Award for EU collaboration on rare diseases

30 March 2017

The European Commission’s Directorate General for Health and Food Safety (DG SANTE) today wins the inaugural overall European Ombudsman’s Award for Good Administration for its work in promoting cross-border collaboration to improve the lives of the 30 million people living with a rare disease in Europe. The nomination for this award was made by EURORDIS-Rare Diseases Europe.

Declaration on rare diseases launched at conference held by Maltese Presidency of the EU Council

21 March 2017

At today’s Conference on the Development and Access of Medicines for Rare Diseases, held by the Maltese Presidency of the Council of the EU and the Malta Medicines Authority, participants recognise the need for structured, voluntary cooperation between EU Member States to improve rare disease patients’ access to better diagnosis, care, therapies and technologies.

On this momentous day, with the rare disease community at large represented, EURORDIS launches a Declaration calling for improved mechanisms of structured cooperation across EU Member States to address the unmet needs of people living with a rare disease.

Launch of European Reference Networks: connecting experts to improve healthcare for 30 million rare disease patients across Europe

28 February 2017

Today, on the 10th edition of Rare Disease Day, the European Commissioner for Health & Food Safety, Vytenis Andriukaitis and Chief Executive Officer of EURORDIS, Yann Le Cam, launch 24 European Reference Networks (ERNs).

EURORDIS calls for collaborative process to improve patients’ access to rare disease medicines

22 February 2017

Today, at its second Multi-Stakeholder Symposium, EURORDIS-Rare Diseases Europe initiates a collaborative process between all stakeholders involved in developing medicines that aims to improve patients’ access to rare disease medicines.

Winners of the EURORDIS Awards 2017 announced

21 February 2017

Vytenis Andriukaitis, European Commissioner for Health and Food Safety, this evening presents the EURORDIS Awards 2017 at a ceremony in Brussels.
Press release also available in French.

2017: 10th edition of Rare Disease Day

25 January 2017

Patients around the world will mark the tenth annual Rare Disease Day on Tuesday 28 February. In the build up to Rare Disease Day 2017, the official video launches today.

First 23 European Reference Networks for Rare Diseases - A milestone for 30 million patients in Europe

15 December 2016

The European Commission today announces the first 23 European Reference Networks for rare diseases (ERNs). This momentous step comes after years of collaboration and efforts between rare disease patients, clinical experts, and policy makers in EU Member States, at the European Commission and the European Parliament to bring the ERNs to fruition.

First Rare Barometer Voices survey on the impact of rare diseases on daily life

2 August 2016

EURORDIS-Rare Diseases Europe today launches a new survey on the impact of rare diseases on daily life. The survey is the first to be launched under Rare Barometer Voices, a community of people living with or affected by a rare disease who participate in EURORDIS surveys and studies. People living with a rare disease, parents and other family members can take part in the survey (available in 23 languages) and patient organisations are also invited to encourage their members to participate.

EURORDIS joins MIT NEWDIGS consortium to accelerate discovery and adoption of new medicines

1 July 2016

MIT’s NEW Drug Development ParadIGmS (NEWDIGS) program announced today that EURORDIS-Rare Diseases Europe, the European Organisation for Rare Diseases, has joined its international effort to accelerate delivery of new, better, affordable therapeutics to patients faster. NEWDIGS brings together pharmaceutical and biotech companies, regulators, insurers, patient advocacy groups, and other healthcare stakeholders to design modern systems that connect scientific discovery to patient care.

EURORDIS welcomes Dutch EU Presidency’s conclusions on strengthening the balance in the EU pharmaceutical system but identifies major challenges

17 June 2016

EURORDIS-Rare Diseases Europe welcomes the Council of the European Union’s conclusions on strengthening the balance in the pharmaceutical system in the EU, published today, but expresses reservations about a statement that proposes the wrong solutions to problems surrounding access to medicines, which affect people living with a rare disease.

European rare disease patients call for increased European collaboration on medicine pricing to improve access

1 June 2016

EURORDIS-Rare Diseases Europe and its member organisations are calling for more collaboration between all relevant national and European authorities and the pharmaceutical industry to streamline the medicine pricing process so that patients can access the medicines they need. 

European Conference on Rare Diseases & Orphan Products highlights added value of EU collaboration for patients

26 May 2016

The 8th edition of the European Conference on Rare Diseases & Orphan Products (ECRD) kicks off today in Edinburgh. Held for the first time in the UK, ECRD 2016 brings together more than 700 participants from over 40 countries including patient representatives, healthcare professionals, researchers, industry, payers, regulators and policy makers.

New Rare Disease Platform launches in Barcelona

31 March 2016 

EURORDIS, the European Organisation for Rare Diseases, today launches a new Rare Disease Platform in Barcelona. The Rare Disease Platform will be housed at the historic Santa Apollònia Pavilion of the Sant Pau Art Nouveau site, Barcelona and brings together the activities of local, national, European and international rare disease patient groups. 

Register for Rare Barometer Voices to make your voice heard!

9 March 2016 

EURORDIS, the European Organisation for Rare Diseases, invites rare disease patients, family members and patient representatives to register for Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease.


Improved European collaboration needed to better patients’ access to rare disease therapies

24 February 2016 

A unique combination of representatives from industry, patient groups, academia, health-technology-assessment bodies, regulators and payers came together to discuss the pressing issue of how to improve patients’ access to rare disease therapies across Europe. Speakers at the EURORDIS Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies include EU Commissioner for Health & Food Safety Vytenis Andriukaitis and Member of the European Parliament for Belgium Philippe de Backer.


2016 EURORDIS Awards for Excellence in the Field of Rare Diseases

23 February 2016 

On 23 February,  Her Royal Highness Princess Astrid of Belgium presents the 2016 EURORDIS Awards at the EURORDIS Awards and Black Pearl Evening in Brussels.
The EURORDIS Awards recognise outstanding patient advocates and organisations, volunteers, scientists, companies, media and policy makers who have contributed to reducing the impact of rare diseases on people's lives.


Rare Disease Day 2016 - 29 February - “Join us in making the voice of rare diseases heard”

3 February 2016

On the 29 February, the rarest day of the year, patients around the world marked the ninth annual Rare Disease Day. People living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry come together in solidarity to raise awareness of rare diseases. Rare Disease Day is a patient-led campaign and everyone can get involved!


Major rare disease stakeholders announce new collaboration to streamline efforts

15 October 2015 

Rare Diseases International (RDI), the European Organisation for Rare Diseases (EURORDIS) and the International Conference on Rare Diseases and Orphan Drugs (ICORD) today jointly announce a significant new collaboration to boost progress on rare disease policy worldwide at ICORD 2015, the 10th ICORD Conference.


Launch of Global Voice for Rare Disease Patients: Rare Diseases International

28 May 2015 

The global voice for rare disease patients launches today. Over 60 patient representatives from 30 countries are gathering in Madrid, Spain for the inauguration of Rare Diseases International and to adopt a joint declaration to advocate for rare diseases as an international public health priority.


Rare Disease Day 2015 - 28 February - “Living with a Rare Disease: Day-by-day, hand-in-hand”

27 February 2015

EURORDIS and the 30 National Alliance rare disease patient organisations from around the world organised the annual awareness campaign to put rare diseases in the spotlight!
Throughout the world, hundreds of rare disease patient organisations and their partners joined forces to promote awareness for rare diseases and the millions of people affected by them. Thousands of events took place, bringing together hundreds of thousands of people in solidarity to improve the lives of people living with a rare disease and their families.


EURORDIS Awards 2015 for Excellence in the Field of Rare Diseases

25 February 2015 

The European Organisation for Rare Diseases (EURORDIS) yesterday presented its 2015 Awards for excellence in the field of rare diseases at the EURORDIS Black Pearl Gala Dinner, held to mark Rare Disease Day 2015 which takes place on 28 February.


Commissioner Andriukaitis Opens Event on How Patients Influence Rare Disease Policy Making

24 February 2015 

EU Commissioner for Health & Food Safety Vytenis Andriukaitis heads an exciting agenda of speakers at this year’s EURORDIS Policy Event, which takes place today in Brussels. The event, which is being held to mark the 8th Rare Disease Day, sees people living with a rare disease discuss the ‘rare but real’ game-changing influence they have had on policy with relevant decision makers.

Page created: 20/01/2016
Page last updated: 20/02/2019
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases