EURORDIS press releases

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: 16/12/2016
 
 
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 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