Rare Diseases Malta Urges Government Action To Support People With Rare Diseases

The National Alliance for Rare Diseases Support - Malta has renewed its call for decisive government action to support people living with rare diseases, stressing that meaningful progress now depends on implementation rather than further proposals.

Speaking in Valletta under the patronage of the Speaker of the House, the organisation highlighted over a decade of sustained advocacy, patient support, and national and international collaboration.

Addressing Members of Parliament, healthcare professionals, patient representatives, and the media, Rare Diseases Malta outlined the persistent challenges faced by individuals and families affected by rare conditions.

These include prolonged diagnostic delays, limited treatment options, and unequal access to specialised healthcare services, challenges which disproportionately affect patients in smaller Member States such as Malta.

The national rare disease movement gained policy recognition in 2014 through the efforts of The Marigold Foundation, at a time when rare diseases were largely absent from public discourse.

This momentum led to the establishment of the National Alliance for Rare Diseases Support – Malta, providing a unified national voice for patients, families, professionals, and organisations.

Through strategic collaboration with EURORDIS, the European Organisation for Rare Diseases, the Alliance strengthened Malta’s representation within the wider European and global rare disease community.

A key milestone was the launch of the National Directory for Rare Diseases in 2016, developed in partnership with the Ministry of Health. The directory remains a vital tool for identifying rare conditions and supporting service planning in a small island state with limited specialist capacity.

Internationally, Rare Diseases Malta has held a seat on the United Nations ECOSOC Committee for Rare Diseases since 2020, contributing to global policy discussions and reinforcing the principle that rarity should never result in invisibility.

Looking ahead, the organisation reaffirmed its commitment to advocating for a National Plan for Rare Diseases aligned with European frameworks and the emerging European Action Plan. Emphasis was placed on meaningful patient involvement, harmonised policies, and improved data sharing to ensure equitable and high-quality care.

Concluding the event, Rare Diseases Malta called for sustainable support for patient organisations, formal recognition as the national hub for rare disease advocacy and coordination, and a structured partnership with the Ministry of Health, underscoring that the time to move from proposals to action is now.

#MaltaDaily