The Voice of Rare Disease
Patients in Europe
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’.
EURORDIS thanks the patients and volunteers featured in the video for their involvement: Geoffray, Mathieu and Stéphanie, Marie-Laurence, Michel and Gaia, and Océane.
EURORDIS thanks AFM-Téléthon for the production of the 2017 video. A key player in research and therapeutic innovation over the last 30 years, AFM-Téléthon provides EURORDIS with vital financial support.
Laurence Tiennot-Herment, President of AFM-Téléthon, commented, “We are co-founders of EURORDIS and highly engaged with the organisation. It was therefore a natural fit for us to oversee the production of the 2017 Rare Disease Day video, which focuses on research, a theme crucial to patients and their families. Rare diseases are no longer in the shadows, we have moved from a complete medical abyss to an increasing number of clinical trials. Patients and their families need the rare disease community to continue and grow its efforts, time is of the essence.”
Simona Bellagambi, Member of the EURORDIS Board of Directors and representative of UNIAMO, the Italian alliance for rare diseases, commented, “Rare disease research is happening. But it’s not enough. We need to shout loudly to make sure all researchers, universities, doctors and companies know that we need a huge commitment from everyone involved to do more research. Through research, we can ensure that more patients get the answers they need about their diseases”.
Everyone can get involved!
- Download the official Rare Disease Day 2017 poster and other communication tools (logo, social media banner and profile picture, email signature and information pack).
- Organisations in over 80 countries and regions are participating in Rare Disease Day 2017 by holding local events. This year also sees a new patient organisation in Botswana participating for the first time and a new Rare Disease Day partner in Iran. Post your Rare Disease Day event, tell your story or raise and join hands!
- Companies, patient organisations, learned societies and hospitals can also become a friend of Rare Disease Day.
About Rare Disease Day 2017
Rare Disease Day is a patient-led campaign that EURORDIS and the Council of National Alliances launched in 2008. Since then, thousands of patient organisations in over 100 countries and regions have held tens of thousands of events.
Rare Disease Day brings together millions of patients, families, carers, medical professionals, policy makers and members of the public in solidarity.
Sean Hepburn Ferrer, the eldest son of the late Audrey Hepburn who passed away from rare cancer pseudomyxoma adenocarcinoma, is Rare Disease Day 2017 Ambassador.
Over the last few decades, funds dedicated to rare disease research have increased. But it must not stop there. Rare Disease Day 2017 is the opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
Eva Bearryman, Communications Manager, EURORDIS