Aging and rare diseases: from epidemiology to a call to action.

WHY IT MATTERS

If you or a family member has a rare disease and are aging, this research highlights that healthcare systems need better plans to care for older patients with rare conditions—which could lead to improved treatment strategies and support services tailored to your needs.

Researchers in Italy studied how rare diseases affect older adults. They found that thousands of people are diagnosed with rare diseases after age 65, and thousands more who were diagnosed as children or young adults are now living into old age with these conditions. This study shows that rare diseases in elderly people are becoming more common and important to understand.

Aging and rare diseases: from epidemiology to a call to action. Abstract: Aging of the general population, advances in diagnostic and therapeutic strategies, and care improvements are making rare diseases (RDs) an emerging phenomenon in the geriatric population. This study aims to provide a snapshot of the growing population of older RD patients using population-based data from the Veneto region rare disease registry (VRRDR), Italy. We report the number of patients diagnosed in old age and the number of those transitioned from adulthood into old age, estimating the prevalence of older RD patients as of 31 December 2022. Finally, we analyzed the composition of their therapeutic plans. During the study period, 8975 patients received an RD diagnosis after 65 years of age, while 4214 patients diagnosed in their childhood or adulthood experienced the transition Authors: Mazzucato et al. Journal: European geriatric medicine MeSH: Humans, Rare Diseases, Aged, Italy, Male, Female, Registries, Aged, 80 and over, Aging, Prevalence