Eurordis - Rare Disease Europe

Aldo Soligno is an emerging talent in Italian documentary photography. In October 2014, he 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. It investigates the needs, hopes, difficulties, but above all, the joys and daily achievements of those living a ‘rare life’.

This project was carried out through home visits to 28 families in 7 European countries thanks to the collaboration with UNIAMO, the Italian Federation of Rare Disease associations. Through Aldo’s work, he has inspired other projects, such as #MaketoCare, that in turn, have placed a spotlight on the rare disease community. The project was published in six major European magazines and was the object of several talks and presentations. It was also broadcast on the Italian national television channel RAI.

Aldo receives the Media Award for his dedication and continued efforts to increase the visibility of people living with a rare disease.

The EURORDIS Media Award recognises the long-standing support, for the past 30 years, of France Télévisions in broadcasting live the French Telethon organized in partnership with the AFM-Téléthon. Millions of people have taken part and donated to the AFM-Téléthon cause and thanks to this it has been 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, all leaders in research and development of biotherapies for rare genetic diseases. Généthon, for example, stands out through its unique ability to develop, produce and test its own innovative genebased 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.

Peter continues to become increasingly active in the rare disease community, demonstrating commitment and passion. 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.

Rick Guidotti is “changing the world, one picture at a time”.

A graduate of New York’s School of Visual Arts, Rick Guidotti led a successful career as a fashion photographer, working between New York, Paris and Milan for high profile clients such as the fashion house Yves Saint Laurent and magazines Elle and Harpers Bizarre. 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 non-profit 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.

His work has been recognised internationally, raising public awareness for the beauty of difference. He has given confidence, self-belief and humanity to people frequently defined by their diagnosis. 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 London. He was the Financial Times’ Moscow correspondent and then bureau chief from 1998 to 2004, and previously served as Paris correspondent, financial correspondent, general reporter and corporate reporter. 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.

He is author, most recently, of Inside Putin’s Russia and The French Exception. Mr Jack has written articles for medical journals including the British Medical Journal and the Lancet. He has written specialist reports on the French insurance industry, audit committees, networking and work shadowing; as well as chapters in books on Russia, ethics, and financial reporting.

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.

The BBC has been covering rare diseases and helping to raise awareness about the challenges faced by rare disease patients for over 3 decades. Indeed, the BBC’s Songs of Praise in 1982 helped EURORDIS Past President, Lesley Greene, to find other ‘orphan parents’ and specialists for her daughter’s rare metabolic disease and subsequently establish a patient group. The BBC also commissioned a programme called Diagnosis in 2011 featuring several rare diseases.

In addition, and on many occasions, a rare disease is featured on the popular medical dramas Casualty and Holby City. Indeed, Rosie Marcel who plays “nasty Jak” in Holby City recently revealed she has Behçets Syndrome. Furthermore, through its grants programme, BBC Children In Need regularly supports many projects linked to rare diseases which would otherwise struggle to obtain funding. The visibility of such broadcasts and the BBC Children In Need appeal provide huge publicity, support and networking opportunities which are invaluable to a community which struggles because of its “unpopular” image.

Over the years, the work of the BBC has put a face to rare diseases and highlighted important issues for people living with rare diseases, such as delayed or inaccurate diagnosis, difficulty accessing care, financial burden and tremendous feeling of isolation.