Description
Every year Rare Disease Day gives us a special moment to bring awareness back to the rare disease community. Despite their name, when considered as a whole, rare diseases are not so rare. Although many regions and countries have already made commendable progress in addressing the needs of patients with rare diseases, this progress has not been consistent across communities. Despite scientific progress, patients with rare diseases still face serious challenges due to a multitude of scientific knowledge gaps, and getting the correct diagnosis is the first hurdle. Once a diagnosis has been made, people living with a rare disease continue to face barriers to care. Treatment options remain limited, with less than 5% of rare diseases having a treatment. Even when there is adequate treatment, access is not guaranteed. The identification of health inequities faced by patients with rare diseases has guided the theme of the 2025 edition of Rare Disease Day to be EQUITY. The rare disease patient community continues to face diagnostic inequities in facilitating accurate diagnoses, access to medical technologies, and access to orphan drugs. These health inequities and unequal access are experienced by people with rare diseases across the globe, and are particularly felt in countries with limited resources and competing health priorities.
In this context, INSMC Alessandrescu-Rusescu Bucharest is also involved this year in the global campaign dedicated to the International Day of Rare Diseases by organizing the 17th edition of the Symposium with the theme “Equity in providing medical services for rare diseases – Truth or Challenge ?”, addressing topics related to equity in Clinical Diagnosis, in the use of modern diagnostic Technologies, in Therapeutic Intervention based on the personalized approach and standards of care, in Prevention in rare diseases.
Come together because together we can do more!
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