Rare Disease Day: it is time to ‘show your rare’
Wednesday 28 February marks the eleventh edition of the international Rare Disease Day is being celebrated in over 90 countries and by hundreds of patient organisations worldwide.
Rare Disease Day is coordinated by EURORDIS with the goal of raising awareness about rare diseases and the challenges facing those living with these conditions.
The Rare Disease Day slogan this year is 'Show your rare, show you care'. Active and collaborative research is essential not only to discovering new drugs and targets for these rare diseases but also for a better understanding of the disease itself. It is important to sustain research efforts towards providing support and adequate care to patients, patients’ families and caregivers. To find out about the Rare Disease Day events happening worldwide click here!
For the first time ever, Togo, Ghana and Trinidad and Tobago will participate in Rare Disease Day. The political momentum resulting from Rare Disease Day has over the years, also served advocacy purposes, contributing to the advancement of EU policies on rare diseases and to the creation of national plans for rare diseases in a number of EU Member States.
OrphaNews International wishes you an eventful and productive day and thanks to all the groups that are making an effort to put rare diseases on the agenda of topics that merit awareness, action and funding.
This year’s video for Rare Disease Day (see below at the end of the editorial) has been translated into over 30 languages!
EURORDIS: Black Pearl Awards and the winners are!
- EURORDIS Young Patient Advocate: Sammy Basso, Associazione Italiana Progeria Sammy Basso, Italy
- EURORDIS European Rare Disease Leadership Award: Bruno Sepodes, Chair, Committee of Orphan Medicinal Products, European Medicines Agency, Portugal
- EURORDIS Policy Maker Award: Elena Gentile, Member of the European Parliament, Italy
- EURORDIS Scientific Award: Professor Michele De Luca, University of Modena and Reggio Emilia, Italy & Dr Tobias Hirsch, BG University Hospital Bergmannsheil, Germany
- EURORDIS Volunteer Awards: Chris Sotirelis, United Kingdom & Helene and Mikk Cederroth, Wilhelm Foundation, Sweden
- EURORDIS Patient Organisation Award: European Pulmonary Hypertension Association
- EURORDIS Company Award for Innovation: Novartis
- EURORDIS Company Award for Patient Engagement: The PARADIGM Project (the European Federation of Pharmaceutical Industries and Associations-EFPIA, Bayer, UCB and MSD)
- EURORDIS Visual and Audio Media Award: Special Books by Special Kids, Christopher Ulmer, USA
- EURORDIS Written Media Award: ‘On peut changer le monde en vendant des crêpes et des ballons’, Serge Braun, AFM-Téléthon, France
- EURORDIS Lifetime Achievement Award: Alastair Kent OBE, United Kingdom
The EURORDIS Photo Award is one of the Black Pearl Awards that were presented on 20 February at a ceremony in Brussels, held to mark the occasion of Rare Disease Day 2018.
EURORDIS received over 400 photo submissions from nearly 50 countries around the world for the EURORDIS Photo Award 2018! National Geographic photographer Marcus Bleasdale shortlisted his top 5 photos and these were then opened to a public vote.
Winner of the EURORDIS Photo Award 2018!
- 1st Our Way: the winner is Lenny who suffers a rare congenital malformation of the oesophagus called Esophageal Atresia (EA). He has faced surgeries, complications, and life-threatening episodes due to his rare condition.
- 2nd Philipp & Moritz: the picture shows a child with Brittle Bone disease (osteogenesis imperfecta) and his brother.
- 3rd Unsung Heroes: Eddison suffers from Xeroderma Pigmentosum rare disease and the picture reflects the unconditional love and support received from siblings.
View the winning photos