Rare and Complex Diseases Union established in Estonia

The Rare and Complex Diseases Union (Harvik- ja Komplekshaiguste Liit, HKL) was established in Tallinn on August 19 to represent the interests of approximately 80,000 people living with rare diseases in Estonia.

The cross-diagnostic patient organization aims to reduce the burden on patients and their families by advocating for better integration between healthcare and social services. Board member Marek Säde noted that patients should not have to act as their own social workers, lawyers, and care coordinators while managing their illnesses.

Co-founder Professor Katrin Õunap, head of the rare diseases competence center at Tartu University Hospital, emphasized that collective representation will help bring the shared needs of these families to the attention of decision-makers at both the state and healthcare system levels. The union plans to collect patient experiences, identify barriers to care, and promote cooperation between patients, specialists, and government agencies.