The EURORDIS Media Award is awarded to the EwenLife on-demand video platform for offering all people living with a rare disease and their families free accessible online tools to break through the sense of isolation frequently going hand in hand with rare diseases. The platform hosts videos where patients, parents and care givers talk about how rare diseases affect their everyday life – and share some personal tips or advice. What is also noteworthy about the project is the abundant sense of optimism which is prevalent in the interviews, seminars/web series and filmed testimonies the platform hosts. The award also recognises the needs of people living with a rare disease and brings them to the attention of a large audience as well as simultaneously forging bonds of solidarity among the rare disease community.

The EURORDIS Written Media Award recognise Ana Ilić’s unique and raw poetry which has allowed greater and meaningful public understanding of the true realities experienced by the rare disease community.

Her words are a portal for channeling her thoughts, allowing the reader to join her in her journey as a person living with a rare disease.

The EURORDIS Visual and Audio Media Award recognises Noémie Desquiotz-Sunnen’s outstanding achievements throughout her career as a musician.

Noémie’s efforts in organising charity concerts is admirable, and her song ‘Never Give Up’ encouraging to people living with a rare disease to keep on fighting.

The Written Media Award recognises Dr Lisa Sanders’ prestigious New York Times Magazine column ‘Diagnosis’, which has recently inspired a Netflix documentary series of the same name.

Her writing has brought the needs and experiences of people living with a rare disease to the attention of a much wider global audience.

‘Diagnosis’ demonstrates the immense power of collaboration across the global rare disease community; to share research, expertise and therapies across borders and to help patients realise they are not alone, however rare their condition may be.

The Visual and Audio Media Award recognises Tomasz Śliwiński and Magda Hueckel’s important and impactful documentary film, ‘Our Curse’, telling the story of the first six months of their son Leo’s life with Congenital Central Hypoventilation Syndrome (CCHS).

As a result of the discussion raised by this powerful and emotional film, donations have increased across the world for research into CCHS, new medical devices have already come to market, and the families of patients like Leo feel much less alone in their experiences.

‘Our Curse’ has deservedly received global critical acclaim, and this award recognises their powerful talent and ability to highlight the needs of people living with a rare disease to a wider audience, reaching beyond the rare disease community.

For her specialised journal for rare diseases ‘Word for Life’, which has brought the needs of people living with a rare disease to the attention of a wider audience in Serbia and beyond. The content of the journal and the message it portrays is informative, and brings togetherimportant aspects of the rare disease cause. This Award acknowledges how ‘Word for Life’ shares with its readers powerful and supportive patient stories, knowledge and experience from rare disease experts, updates on rare disease legislation, and rare disease news from all over the world. EURORDIS appreciates Word for Life’s important contribution to raising awareness about rare diseases amongst families, medical professionals, and other relevant institutions across the Balkans.

For her inspiring documentary film ‘Et Les Mistrals Gagnants’ which raises awareness by following the lives of five children each living with a different rare disease. By documenting these stories, and allowing these children to speak for themselves, Anne-Dauphine Julliand has helped portray an unfiltered and genuine insight into what it means for each of these individuals to live with a rare disease. EURORDIS acknowledges the excellent media coverage of this documentary, having been broadcasted in Belgium, Japan, Spain, Germany and Lebanon, and AnneDauphine Julliand ‘s appearance in several TV shows to promote her work.

The Award honours her important achievement of bringing the needs of people living with a rare disease to a wider audience, and finding an engaging way to reach an audience that may not already be part of the rare disease community.

The awardee of the Written Media Award 2018 is Serge Braun for his book, ‘On peut changer le monde, en vendant des crêpes et des ballons Dr. Braun worked for over a decade on neuromuscular diseases, working in university research, then in the private sector, where he conducted a gene therapy program dedicated to Duchenne muscular dystrophy, which led to the first worldwide clinical trial of gene transfer for a myopathy. He went on to work in cancer immunotherapy and HIV, whilst being vice-president of Alsace BioValley and co-founder of Neurofit, a company specialized in neurosciences.

From 2005, he joined the Association française contre les myopathies (AFM-Téléthon) and drove its scientific policy with one goal: the development of innovative therapies for rare diseases. The book for which he wins this award talks about both his experience as Scientific Director of the AFM-Téléthon as well as the cause of rare diseases and new developments in genetics, biology, and orphan drugs to cure these diseases. Not only does the book didactically address scientific issues, it is through individual stories and anecdotes that Serge describes how the community has transformed the landscape of genetics, biology and orphan drugs.

The recipient of the Visual & Audio Media Award 2018 is Christopher Ulmer, who, founded Special Books by Special Kids, a video project that seeks to normalise the diversity of the human condition After achieving a BA in Communications and a Masters Degree in Teaching, Christopher Ulmer became a teacher for children with disabilities ranging from brain disorders to autism, and was touched by the connection that he made with these incredible children who wanted to be understood in the world.

He decided to create a book series where his students explained life from their perspective. Originally denied by 50 publishers, Christopher turned to Facebook as a tool to publish his interviews via video and, after 6 months, the page had over 150,000 followers. Spurred on by the support of the rare disease community, Christopher began to interview patients outside of the classroom, and soon decided to do his video interviews full-time in the hope of bridging the gap between individuals with a diagnosis and the general public.

Since the creation of Special Books by Special Kids, the Facebook page has 1.6 million likes, as well as 200,000 Youtube subscribers and 245,000 Instagram followers. By connecting societies around the world, he has helped build a global dialogue around rare diseases and has built a media movement that supports acceptance regardless of diagnosis. This award recognizes how Christopher has helped to portray an unfiltered and genuine insight into what it means for individuals to live with a rare disease, and how he has, importantly, found an engaging way to reach those not directly part of the rare disease community.

In October 2014, Aldo Soligno led the project ‘Rare Lives’, a powerful photographic storytelling tool that gives an insight into the daily lives of people living with a rare disease. “Spending days and weeks with families and patients suffering from a rare disease has meant so much to me to see how opposites can meet and turn into one another: weakness into strength, sadness into joy, despair into determination. Seeing this happen simultaneously in 7 different European countries has confirmed to me that there are no boundaries for scientific research and solidarity and they must not exist for rare disease patients too. I really hope this will be the legacy of my project.” Aldo Soligno.

The EURORDIS Media Award recognises the longstanding support, of France Télévisions in broadcasting live the French Telethon. Millions of people have taken part and donated to the AFM-Téléthon cause, making it possible to support research and create the Institute of Biotherapies for Rare Diseases, with laboratories such as the Myology Institute, Généthon, I-Stem et Atlantic Gene Therapies. Généthon, for example, stands out through its unique ability to develop, produce and test its own innovative gene-based medicines for rare diseases, the creation of which has been made possible from the proceeds of the AFM-Téléthon. Moreover, thanks to the French Telethon, it has been possible to inform the general public about rare diseases, promote changes in the legal framework in France and in Europe and improve the daily life of patients.

Peter O’Donnell is a prominent writer and editor in the rare disease field currently working as Associate Editor of the European Voice. His impressive career has spanned over twenty years and various countries and has included working for prestigious newspapers such as The Financial Times, The Sunday Times, Reuters, the Economist Intelligence Unit and United Press International.

He has worked as an editor, editorial adviser and speechwriter for numerous clients in the corporate, political and academic world and has frequently chaired EU-level policy debates and lectures on EU affairs. This has made him very well placed to be able to write and report forthrightly on the various complicated and rapidly evolving issues surrounding rare diseases such as policy, at which he is incredibly skilled. In October 2013 he spoke at the Lunch Debate on Data Protection at the European Parliament. It is for these reasons that EURORDIS is delighted to award him this year’s Media Award.

A graduate of New York’s School of Visual Arts, Rick Guidotti led a successful career as a fashion photographer; every day he photographed what society deemed the most beautiful people in the world. This perspective was called into question after a chance encounter with a beautiful young girl living with the rare disease Albinism at a New York City bus stop. When he began to research the disease, he was troubled by the dehumanisation of people with rare diseases in medical text books. Since then, Rick Guidotti has launched a nonprofit organisation, Positive Exposure, to change public perceptions of people living with genetic, physical and behavioural differences. The association runs educational and advocacy programs, organises exhibitions in public places and works with other NGOs and medical societies to give “positive exposure” to the beauty of those living with rare diseases. It is in the essence of his approach to changing the perception of beauty on a global scale for people with rare diseases that EURORDIS awards the EURORDIS Media Award 2014 to photographer Rick Guidotti.

Andrew Jack has been a journalist for the Financial Times since 1990. Since 2004, he has specialised in health and pharmaceuticals, based in.

He was one of a group of journalists to be awarded the “1993 British Press Awards Reporting Team of the Year” accolade for coverage of the Robert Maxwell affair. Mr Jack has written articles for medical journals including the British Medical Journal and the Lancet. A geography graduate from St Catharine’s College, Cambridge, Mr Jack was the Joseph Hodges Choate Memorial Fellow at Harvard University, Cambridge,  Massachusetts; a New York City Government Urban Fellow; and a trustee of Pushkin House, a London-based centre for Russian culture. Mr Jack is being awarded the EURORDIS Media Award in recognition of his contribution to better the understanding of rare diseases and the issues surrounding these diseases through his articles written in the Financial Times during the past several years.

In recognition of more than three decades of support raising awareness on rare diseases and covering rare disease issues from a patient perspective.