Looking back on Rare Disease Day 2024
On 29 February, Rare Disease Day brought people around the world together to celebrate the rare disease community’s strengths, highlight recent progress that has been made, and advocate for solutions to the barriers which continue to prevent people living with a rare disease from accessing timely and appropriate diagnosis and care. Over 600 events were held in more than 100 countries, with buildings and monuments across the globe being light up in support of the annual #LightUpForRare campaign.
World monuments illuminated for Rare Disease Day (credit below)
At the European level, the European Parliament’s SANT Subcommittee on Public Health held an exchange of views highlighting the need for increased, unified action on rare diseases across the EU. Members of the European Parliament and the European Commission were joined by Yann Le Cam, CEO of EURORDIS, and Danielle Drachmann, Executive Director of Ketotic Hypoglycemia International, to discuss the current challenges faced by the European rare disease community and the pressing need for a European Action Plan for Rare Diseases. The event also provided Le Cam with an opportunity to introduce EURORDIS’s new Championing the Rare (#ActRare2024) campaign ahead of this year’s EU elections.
In honour of Rare Disease Day, the European Joint Programme on Rare Diseases (EJP RD) published a new video featuring powerful testimonies which highlight the impact the Programme has had on Europeans living with a rare disease. Watch the video, titled “The European Joint Programme on Rare Diseases: Transformative Stories” below.
In the United States, the National Institutes of Health hosted their annual event, Rare Disease Day at NIH. Held each year since 2011, this event aims to demonstrate the NIH’s commitment to helping people with rare diseases through research, and to foster mutually beneficial dialogue among members of the rare disease community. This year’s event featured panel discussions, patient stories, scientific posters, and an art exhibition. A recording of the event is available online.
Several national rare disease organisations also used the Day as an opportunity to launch new campaigns and reports specific to their national contexts. The Canadian Organization for Rare Disorders (CORD) launched the #FightForOurLives campaign, which calls on the Canadian government to release funding which was promised in last year’s National Rare Disease Drug Strategy. Australia’s RArEST Project also launched the country’s first-ever National Recommendations for Rare Disease Health Care, which provide guidance for Australian health professionals on how to provide high-quality care to people living with a rare disease and their families.
For more information about these and other events which took place as part of Rare Disease Day 2024, visit the links below.
Photo credit: CN Tower - Toronto, Canada; Empire State Building - New York, USA; Spinnaker Tower - Portsmouth, UK; Voortrekker Monument - Pretoria, South Africa; Burgerspital - Bern, Switzerland
