Looking back at Rare Disease Day 2023
On February 28, the international rare disease community joined together to share their colours and celebrate Rare Disease Day 2023. Thousands of events were held in over 100 countries, with monuments, buildings, houses and offices around the world being illuminated as part of the #LightUpForRare campaign. The festivities represented the culmination of a month packed full of advocacy and awareness events, including EURORDIS’s Rare Disease Week and 2023 Black Pearl Awards.
At the European level, a group of 49 Members of the European Parliament sent a letter to Ursula von der Leyen, President of the European Commission, calling for a European strategy on rare diseases. Frédérique Ries MEP was lead signatory, along with a number of members from the Network of Parliamentary Advocates for Rare Diseases representing cross-cutting political support. The letter stresses the need for action to address the unmet needs of the European rare disease community, such as diagnostic delays and difficulty accessing medicines. The proposed goals-based strategy would help close gaps between national and European legislation, ensuring that policies and programs in a variety of domains work together to improve the lives of people living with rare diseases.
In the United States, the National Institutes of Health hosted their annual Rare Disease Day at NIH event. The event demonstrates NIH’s commitment to supporting the rare disease community, and provides an opportunity to engage them in ongoing research activities and developments. This year’s iteration featured interactive presentations, patient testimonials, and panel discussions on topics such as gene therapy and the role of advocacy. A recording of the event is now live.
Several national organisations also used the Day as an opportunity to release new reports on the state of rare disease care. The Canadian Organization for Rare Disorders published findings from a survey they commissioned which found that patients and their families continue to experience long diagnostic delays; knowledge information gaps; barriers to accessing drugs; and a lack of coordinated, accessible care. Genetic Alliance UK also released their 2023 Coordinating Care Report, which discusses the importance of integrated, coordinated care to meet the complex and multidisciplinary needs of rare disease patients.
For more information about these and other events which took place as part of Rare Disease Day 2023, visit the links below.
