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Official Rare Disease Day 2017 video out now!
On Tuesday 28 February, patients around the world will mark the tenth annual Rare Disease Day. The official Rare Disease Day video is out now in over 30 languages! Share the video on social media using #RareDiseaseDay. The Rare Disease Day 2017 theme is research and the slogan is “With research, possibilities are limitless”. Imagine what it would be like to live without answers to the most basic questions. This is the reality for many rare disease patients. People living with a rare disease are often unable to get the answers they need about their disease, often because of a lack of research. To illustrate this frustration, this year’s video draws a parallel with a routine that many of us go through multiple times a day – searching for an answer on the internet. The video highlights how exasperating it is when you search on the internet but receive the response ‘your search had no results’.
Rare disease game changers at ECRD 2016
The 8th edition of the European Conference on Rare Diseases & Orphan Products (ECRD 2016) brought together over 750 attendees from nearly 50 countries in Edinburgh, Scotland, UK. Over 120 session chairs, speakers and panelists led discussions on the theme of game changers in rare diseases and exchanged on game-changing policies and initiatives in research, diagnosis, drug development, authorisation and access, care provision, social policy and global society. See the ECRD 2016 Executive Summary including the game changers identified in the conclusions of each theme, the ECRD 2016 conference photos and the 200+ posters. Videos of the opening, plenary and closing plenary sessions, are also available, including: A keynote address from Maureen Watt, Minister for Mental Health, Scottish Government, whose much tweeted quote on rare disease patients set the tone of the conference, “It's not just ‘What's the matter with you?’ but ‘What matters to you?’ ”.
Out now – 2016 Rare Disease Day video!
The 2016 Rare Disease Day video is out now. Watch and share the video with your friends and family on social media to help spread the word that 29 February 2016 is Rare Disease Day. The video, which is being translated into over 20 languages, celebrates the special moments in the lives of people living with a rare disease. Everybody experiences those special moments with their relatives, children, friends and colleagues. These moments can be big or small, every personal moment is as important as another. For people living with or affected by a rare disease, the emotion during these moments can be very strong as they leave behind the challenges they face on a daily basis. Special thanks to Elisa and her parents Sergio and Catia, who are featured in the video. Elisa is living with Williams syndrome. On Rare Disease Day we want to celebrate everyone's special moments – tell us your story! Rare Disease Day 2016 is for everyone! On 29 February, patients around the world will celebrate the ninth annual Rare Disease Day. People living with a rare disease and their families, patient organisations, politicians, carers, medical professionals, researchers and industry come together in solidarity to raise awareness of rare diseases.
EURORDIS Awards 2015 for Excellence in the Field of Rare Diseases
The 2015 EURORDIS Awards for excellence in the field of rare diseases were presented last week in Brussels. The awards recognise outstanding patient advocacy groups, volunteers, scientists, companies, media and policy makers who have contributed to reducing the impact of rare diseases on people's lives. HRH Princess Astrid of Belgium was present for the awards ceremony, as was Rare Disease Day Ambassador Sean Hepburn Ferrer, the eldest son of the late Audrey Hepburn, who passed away from a rare cancer. Yann Le Cam, Chief Executive Officer of EURORDIS, commented, "Rare Disease Day 2015 recognises the millions of families, friends and carers whose daily lives are impacted by rare diseases and who are living day-by-day, hand-in-hand with people living with a rare disease. We are honoured to have awarded this year's winners in recognition of the work they do as patient groups, researchers, rare disease patient advocates, volunteers and leaders to support anyone who is affected by or living with a rare disease." Photos of the award winners are available on the EURORDIS Flickr page.
100 countdown to Rare Disease Day 2015! Post your event on the Rare Disease Day website today!
Website now open for Rare Disease Day 2015 – Post your event online The website for Rare Disease Day 2015 is officially open for business! With 100 days to go, now is the time to start planning and communicating your Rare Disease Day event in order to build momentum and attract participation! To get the ball rolling, EURORDIS has already added details for its annual Policy Event in Brussels. Patients and organisations are encouraged to post information on their Rare Disease Day 2015 activities or to find events to join by visiting the website to see what has been posted where they live. To learn more about how to post your event, join our informational webinar being held on 27 November 2014 at 14:00 (Central European Time). Rare Disease Day has become an international phenomenon, and patients and patient organisations have been largely responsible for this incredible success. Last year, events were held in over 80 countries and regions, in hundreds of cities around the world, giving participants the opportunity to build awareness for their own disease at the local level. 28 February 2015 marks the eighth Rare Disease Day and you are strongly encouraged to get involved and contribute to the growing global awareness for rare diseases and the common challenges patients and families encounter.
Can the Juncker Commission address Europe’s challenges for rare diseases?
A changing of the guard: the new European Commission President-elect Jean-Claude Juncker has now presented the new allocation of European Commission portfolios. The appointment of the College of Commissioners opens a new phase for the European Union, one that will run from November 2014 through the next five years. As the executive body of the European Union, the European Commission is responsible for proposing legislations, implementing decisions, upholding the EU treaties, and the day-to-day running of the EU. The Juncker Commission is much more political than any previous Commissions, a real Government for Europe composed of former Prime Ministers, Vice-Prime Ministers, Ministers and MEPs. Its focus is clearly on the highest EU political/economic priorities, including growth, euro, energy, the digital economy, foreign affairs, and the reduction of bureaucracy. Is public health a priority? In the Treaty of the European Union, the transfer of competence from Member States (MS) to the Community is extremely limited. Still, nothing prevents the EU – one day – from having an ambitious Public Health programme. During the past ten years, the Commission and different stakeholders have tried to make the most of the limited political leverage available. The room for manoeuvre that the new Commission will have in the next five years currently seems to be even further contained, both politically and financially.
Meet the Rare Disease Day Ambassador 2014: Sean Hepburn Ferrer
EURORDIS is delighted to announce the Rare Disease Day 2014 Ambassador: Sean Hepburn Ferrer. Born in Lucerne, Switzerland, Sean Hepburn Ferrer is the eldest son of the beloved late actress and philanthropist Audrey Hepburn. He grew up in Europe and speaks English, French, Italian, Spanish and Portuguese. His father, Mel Ferrer, was an actor, film director and producer. Sean Hepburn Ferrer knows about the struggle rare disease patients and families encounter in their quest to find care. His mother, the late Audrey Hepburn, passed away from rare cancer pseudomyxoma adenocarcinoma. In an eloquent video that is freely available on the official Rare Disease Day 2014 website, Sean Hepburn Ferrer describes this experience and how it and other factors shaped his decision to generously and spontaneously accept to be the Rare Disease Day 2014 Ambassador. Sean Hepburn Ferrer explains: “When my mother visited Africa for UNICEF she would often say ‘We cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…’. It is in this spirit that I accepted this invitation”.
Public Hearing on the Pharmaceutical Legislation in Europe
The Intergroup on Cancer and Rare Diseases will hold a high-level public hearing at the European Parliament to examine the ongoing reform of the EU’s pharmaceutical legislation. This pivotal event comes at a crucial moment in the legislative process and seeks to influence the final direction of the reform in favour of patients living with […]
EURORDIS welcomes EPSCO call for inclusion of health priorities in EU Strategic Agenda
EURORDIS responds to the unanimous conclusions reached by the 27 EU health ministers.
EURORDIS: Compromise amendments on pharmaceutical reforms are a ‘meaningful step’ forward
EURORDIS responds to the result of voting in the European Parliament's ENVI Committee.