Eurordis - Rare Disease Europe

UNIAMO is a non-governmental federation representing more than 200 rare disease patient associations across Italy. Founded in 1999, UNIAMO has been committed to improving the quality of life of the 2 million people living with a rare disease in Italy. They have also consistently advocated on a European level for the protection of the rights of the rare disease community, as the National Alliance for Italy on EURORDIS’ Council of Alliances. A fundamental part of UNIAMO’s work is their coordination of Rare Disease Day (RDD) in Italy and their powerful awareness campaigns that shine a spotlight every year on this special day. This year’s Media and Awareness Raising Award honours UNIAMO’s RDD 2024 campaign, #UNIAMOleforze, created in partnership with the FantaSanremo fantasy game, inspired by the Italian Song Festival.  

The campaign effectively engaged more young people and generated significant online participation, with 60,000 people joining the campaign’s dedicated ‘league’ and UNIAMO achieving 178 million impressions on FantaSanremo pages. Additionally, the campaign reached another seven million people through branding on electric buses in Rome, bus shelters in Bologna, and screens at Venice Airport, all featuring RDD colours and messages to show support for the rare disease cause and encourage public involvement. Perhaps most impressive was the 2024 Italian Song Festival’s 15 million viewers witnessing the host and eight artists showing their support for the rare disease community by making the community’s symbol with their hands on stage. The meticulous planning and execution of the #UNIAMOleforze campaign were exceptional, making it a well-deserved winner of this year’s award.

Proyecto Alpha is a Spanish non-profit association that represents and helps those living with muscular dystrophy due to Sarcoglycan deficiency, and their families. They are a reference association at national level, and they collaborate with the patient advisory committee at European level, as well as with global organisations worldwide. They also collaborate with Sant Joan de Deu hospital in Barcelona on the first natural history study of rare diseases in Spain.

Their extensive work includes their powerful documentary, Never Stop Moving and their song representing and giving visibility to those affected by a rare disease. 

The EURORDIS Media Award recognises media pieces raising awareness of rare diseases and bringing the needs of people living with a rare disease to a broader audience.

With this award, we want to celebrate the documentary’s compassionate depiction of the daily struggle of individuals living with muscular dystrophy and its message of hope and solidarity. Never Stop Moving not only highlights the resilience of Laura, Gerard, and Lucas by sharing their stories, fears, and triumphs but it also offers a unique and creative approach to raising awareness and demonstrates the importance of research in finding a cure.

Its impressive presence on social media platforms, coupled with its recognition in written and audiovisual press, underscores its success in making these diseases more visible. Never Stop Moving not only informs but also inspires its public, making it a highly deserving recipient of the EURORDIS Media Award 2024.

Check out the official trailer here: https://youtu.be/X-W_WAwlQsE

The EURORDIS Media Award recognises the film “Red Sandra” for its compassionate and moving depiction of a Belgian family’s experience with their daughter’s diagnosis with Metachromatic leukodystrophy (MLD), a rare muscular disease. Created in 2021, the film recounts Sandra’s parents’ subsequent battle to secure treatment for their daughter.

EURORDIS wishes to celebrate the film’s ability to bring the Rare Diseases cause to a wider audience and demonstrate the realities of rare disease diagnosis, with many individuals and families facing geographical and economic obstacles to treatment.

The film offers hope, solidarity and a valuable insight to all those living with or caring for someone living with a rare disease, particularly those struggling to access funding for treatment.

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 and 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 caregivers 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 which 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.

Noémie Sunnen was born in Luxembourg. She studied classical and lyrical canto at the Music Conservatory of Luxembourg and at the Conservatoire National Régional de Nancy. She obtained several prix supérieurs and other prizes. She has performed several operatic roles in Luxembourg, including Queen of the Night in the Magic Flute by W.A.Mozart. She has also appeared at the opera company in Trier, Germany. For several years now she has performed as a soprano soloist at a number of concerts and recitals together with various orchestras and choirs. Her repertoire ranges from baroque and classical music to the romantic music of the 19th century, as well as contemporary music of the twentieth and twenty-first centuries, including Lied, oratorios and opera. Noémie is suffering from motor-neurone disease ALS (Amyotrophic lateral sclerosis), but she still continues singing and has organised several concerts to raise awareness about the disease and gather funds for research.

Ana Ilić is a poet, a passionate advocate for social inclusion and a public activist. Ana is from Serbia and lives with Friedreich’s Ataxia, which she challenges everyday through words. She uses poetry as a portal for channelling her thoughts allowing her audience to join her in her journey as a person living with a rare disease. The unique and raw nature of her poetry has allowed greater and meaningful public understanding of the true realities experienced by the rare disease community. Ana graduated at the department of philosophy at the University of Nis in 2019 and also studied at the IT academy. She is the author of three notable poetry books and award-winning poems included in several poetry anthologies. Her poems have been published in professional magazines, translated into English and Polish, read on television and radio shows with the participation of famous Serbian public figures, published at about 30 literary events throughout Serbia, at the Belgrade Book Fair and at the largest book fair in the world, in Frankfurt. With the support of the diaspora, the first book of poems was promoted in Los Angeles and Toronto. Ana has participated in more than 100 interviews over the past few years and is a true representative of the Serbian community for rare diseases. Every day, Friedreich’s ataxia occupies a small part of her body, making it increasingly difficult for her to live normally. Although in a wheelchair, with serious cardiomyopathy, insulin life, skeletal deformities, she amazes us with her incredible energy, love for art and philosophy, constant desire for new knowledge and search to find answers to the most important life questions. Today, Ana works as a graphic designer in Nis, where she lives and creates, and is a student of the fifth generation of the Academy of Democracy, a prestigious CRTA, a civil society organization dedicated to the development of democratic culture and civic activism.

The EURORDIS Visual & Audio Media Award recognises Tomasz Śliwiński & 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), also known as Ondine’s Syndrome. CCHS is a rare congenital disease of the central nervous system and patients do not have a breathing reflex, meaning they are artificially ventilated at least during the night. The documentary has had a huge impact in raising awareness and improving the situation for patients like Leo living with 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. The CCHS Foundation has been established in the USA, and Tomasz and Magda are its Regional Coordinators in Poland, with the principal aim of raising money to support CCHS research. Additionally, together with Anna Palusińska, Tomasz and Magda have started the Polish CCHS Foundation “Lift the Curse”. By documenting their personal experiences as parents of a child with a life-threatening rare disease, Tomasz and Magda have provided an authentic and genuine insight into what life can entail for rare disease patients and their families. ‘Our Curse’ has deservedly received global critical acclaim, winning a long list of film festival awards, and being nominated for Best Documentary (Short Subject) at the 87th Academy Awards. This Black Pearl Award recognises Tomasz and Magda’s powerful talent and ability to highlight the needs of people living with a rare disease to a wider audience, and for that we would like to thank them on behalf of our rare disease community.

Dr. Lisa Sanders is an American physician, medical author and journalist, and assistant professor of internal medicine and education at Yale School of Medicine. In 2002, she began writing a column for the New York Times magazine called ‘Diagnosis’, covering complex and rare medical mystery cases, which has also inspired a Netflix documentary series released in 2019. Her prestigious and popular column has brought the needs and experiences of people living with a rare disease to the attention of a much wider global audience. The cases tackled in ‘Diagnosis’ give an invaluable platform to the rare disease community and share powerful stories with the broader public, who might not otherwise encounter the world of people living with a rare disease and their struggles to reach a diagnosis. The stories told in ‘Diagnosis’ demonstrate the immense power of collaboration across the global rare disease community, to share research, expertise and therapies to help patients across borders. Such collaboration often helps patients to realise they are not alone, however rare their condition may be. Dr. Sanders’ column has made an important contribution to raising awareness about rare diseases across the USA and beyond, and we are delighted to honour her work with this Black Pearl Award.

The EURORDIS Visual & Audio Media Award recognises Anne-Dauphine Julliand for her inspiring feature-length documentary film, Et Les Mistrals Gagnants, which was released in 2017. Anne-Dauphine was born in 1973 in Paris. After studying journalism, she took her first steps as a writer in the daily press, and later in real estate press. She married in 2000 and had four children: Thaïs, Gaspard, Arthur and Azylis. In 2006, her daughter Thais was diagnosed with metachromatic leukodystrophy, a rare form of lysosomal disease and a year later, Thais tragically died of this disease. The family soon discovered that her younger sister Azylis was also carrying this disease. In 2011, Anne-Dauphine Julliand published Two Little Steps on the Wet Sand, which tells the story about the life, illness and death of Thaïs, then A Special Day in 2013 where she recounts her life as a mother facing the serious and rare illness of her two daughters. Four years later, Anne-Dauphine directed the documentary Et Les Mistrals Gagnants. It raises awareness of various rare diseases through 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 has helped portray an unfiltered and genuine insight into what it means for each of these individuals to live with a rare disease. The documentary was broadcast in Belgium, Japan, Spain, Germany and Lebanon, bringing the needs of people living with a rare disease to a wider audience, as well as 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 2019 is Bojana Mirosavljević for her specialised journal for rare diseases, ‘Word for Life’ (Serbian: ‘Reč za život’). From her personal experience of having a daughter Zoya with Batten disease, and then the huge grief of losing her to the disease in 2013, Bojana invested all her efforts in building a better environment for other patients and parents, including this magazine. Distributed bi-monthly in both printed and electronic form, ‘Word for Life’ is the first and only journal dedicated to rare diseases in the Balkan region and has brought the needs of people living with a rare disease to the attention of a wider audience in Serbia and beyond. The journal brings together important aspects of the rare disease cause, sharing 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. This award recognises the journal’s important contribution to raising awareness about rare diseases through its reach not only to families, but also to medical professionals, and other relevant institutions across the Balkans.

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.

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. Through the testimony of families, researchers, doctors and volunteers, Serge gradually reveals the vision of ordinary people doing extraordinary things. Aimed at non-scientists as well as specialists, the book is both accessible and engaging, with profits going to the AFM-Téléthon.