Rare Diseases International

Thank you, Honorable Chair and esteemed delegates.

We welcome the report and underscore that mental health initiatives must include the 300 million people worldwide living with a rare disease. Data shows that people with rare diseases and their carers experience significantly higher rates of anxiety, depression, social isolation, and, sadly, suicide, driven by diagnostic delays, uncertainty, stigma, and limited treatment options. Mental health services are often not adapted to their complex, lifelong needs.

We therefore call on Member States to integrate rare diseases into national mental health strategies, ensure access to multidisciplinary care, promote psychosocial care, and enable patient-led communities as essential sources of support.

Addressing mental health in rare diseases is critical to achieving equitable, people-centred care.

Thank you.