Rare Diseases International

Thank you, Honorable Chair and esteemed delegates.

We welcome the report and stress that primary health care must better serve the over 300 million people living with a rare disease, particularly in low- and middle-income countries.

Primary care is often the first point of contact with the health system, yet many people face fragmented or absent care pathways, delayed diagnosis, and limited referral systems, worsening health outcomes and impacts on their mental well-being. Strong, people-centred primary care can facilitate early recognition, care coordination, and continuity across the life course.

We call on Member States to embed rare diseases in primary health care strategies, strengthen referral networks, and invest in training and digital tools to support frontline providers, to build inclusive care pathways, particularly in resource-limited settings, and advance universal health coverage.

Thank you.