The Voice of Rare Disease
Patients in Europe
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.
A patient-led campaign, organisations in over 80 countries and regions are participating in Rare Disease Day 2016 by holding their own local events. This year also sees Uganda and Indonesia participate for the first time, as well as the launch of a new version of RareDiseaseDay.org. The Rare Disease Day 2016 posterfeatures Yuliya, who is living with type 2 spinal muscular atrophy.
Read more about the Rare Disease Day 2016 theme Patient Voice and slogan Join us in making the voice of rare diseases heard.
Sean Hepburn Ferrer, the eldest son of the late Audrey Hepburn, who passed away from rare cancer pseudomyxoma adenocarcinoma, is Rare Disease Day Ambassador. He commented, "Rare Disease Day brings together the millions of people affected by a rare disease across the world. The number of people living with a rare disease is staggering, 60 million and counting. This number cannot be ignored."
Yann Le Cam, Chief Executive Officer of EURORDIS, the European Organisation for Rare Diseases, said, "This RDD we are celebrating the Patient Voice. Every person living with a rare disease and their families can tell a story of the journey of resilience they travel in trying to navigate a diagnostic maze and to access care and treatment."
He added, "Rare disease patients around the world work strenuously to ensure their voice is heard and that they bring about the change needed to improve their lives. We are moving from isolation and despair to a critical mass of citizens that bring a strong voice and hope through positive actions. The momentum for Rare Disease Day is truly global and growing!"
Participate online in EURORDIS Rare Disease Day events
Everybody around the world is invited to participate online in two events that EURORDIS is holding to mark the occasion of Rare Disease Day 2016:
- The 2016 EURORDIS Awards Ceremony will be live web streamed from Brussels on 23 February from 17 – 18:30 GMT+1.
- The opening session of the EURORDIS Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies will also be live web streamed on 24 February from 10:30 – 14:30 GMT+1. Speakers include Vytenis Andriukaitis, EU Commissioner for Health & Food Safety. Follow the conversation online on the day with #RareEU2016.
Eva Bearryman, Junior Communications Manager, EURORDIS