People living with a rare disease face multiple challenges: they wait an average of 5-6 years for a diagnosis (with many remaining undiagnosed), have to travel long distances to seek treatments and face financial challenges due to healthcare costs and lost income. While a lot of progress has been made in the treatment of rare diseases, many people in low-to-middle-income countries still struggle to access even the most basic care. Your gift will help us continue to be a strong voice for the rare disease community and support international initiatives to improve diagnosis and care for Persons Living with a Rare Disease and families worldwide by:
- providing support to rare disease organizations in low- and middle-income countries
- international advocacy work to support the rare disease community globally
- helping people living with rare diseases get the support they need