EURORDIS press releases
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).
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.