Greek health sector welcomes WHO resolution targeting rare diseases

Euractiv

04-07-2025

The World Health Assembly (WHA), the decision-making body of the World Health Organisation, has unanimously adopted a groundbreaking resolution on "Rare Diseases: A Global Priority for Equity and Inclusion." For both the patient community and the industry, it signifies a turning point for rare disease policies.
This is the first time rare diseases have been formally recognised as a significant international public health concern, offering a long-overdue platform to address the challenges faced by over 300 million people worldwide.
The resolution sets the stage for the creation of a comprehensive, ten-year Global Action Plan for Rare Diseases.
Dimitris Athanasiou, Vice President of Rare Disease Greece, described the resolution as a "historic breakthrough" and a moral imperative for governments to act. "For the first time," he told Euractiv, "the international community has acknowledged that people living with rare diseases face systemic inequality, and it is now our responsibility to act on this recognition."
The Hellenic Federation of Pharmaceutical Companies (SFEE) welcomed the adoption of the resolution.
"The adoption of the World Health Assembly Resolution on Rare Diseases is an important international development, which lays the foundations for the formulation of meaningful and coordinated policies, geared towards the needs of the 300 million people living with a rare disease," Mihalis Himonas, General Director of SFEE, told Euractiv.
Evolving rare disease care
Pushing towards an international strategic framework for rare diseases, the resolution also calls on the WHO Director-General to work closely with member states and stakeholders to develop a structured framework that improves early diagnosis, strengthens healthcare delivery systems, promotes research and data sharing, and integrates rare diseases into national health strategies.
This includes placing rare conditions within the context of universal healthcare coverage, education, social services, and registries.
Twenty-six countries have already co-signed the resolution, including Greece, and many others have initiated national-level discussions and debates to develop or revise their own Rare Disease Action Plans.
Towards a national strategy
For Greece, a country where progress has been made but challenges remain, this resolution arrives at a critical moment. It is estimated that rare diseases affect up to 6% of the country's population.
Patients with rare diseases in Greece still face substantial delays in diagnosis, while access to innovative treatments faces hurdles. In addition, rare disease patients and their families often encounter significant social and economic hardship due to inadequate support systems and fragmented care.
Within this landscape, the resolution assumes added significance for Greek stakeholders, including both patients and the healthcare industry.
Athanasiou emphasises the need for a different approach to managing rare diseases.
"This requires close collaboration between governments, regulatory authorities, the pharmaceutical industry, and patient organisations," he told Euractiv, adding that "only through coordinated action can we move beyond fragmented solutions and transition toward a holistic and sustainable model of care."
In a recent policy brief on rare diseases, SFEE emphasised the importance of cross-sector collaboration, calling on Greek authorities to move swiftly toward a fully developed and operational national action plan.
"With a firm commitment and active participation, SfEE and its Platform on Rare Diseases are working to produce evidence-based pharma policy, in their effort to contribute at the same time to the formulation of effective and sustainable healthcare and pharma policies at both national and European levels," Himonas commented to Euractiv.
"Greece, as a signatory country, is called upon to proceed with the design and implementation of a National Action Plan, which will respond to the specific needs of patients, ensuring their equal and unhindered access to diagnosis, treatment and innovation," he added.
[Edited by Brian Maguire]