Joint EUCOPE – IFPMA statement to support the adoption of the WHA Resolution on Rare Diseases

 

 

16 April 2025, Geneva –  The International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), representing the innovative pharmaceutical industry worldwide, and the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE), representing small and mid-sized innovative health technology companies in Europe, welcome and echo the Call to Action issued by the Coalition in Support of the World Health Assembly (WHA) Resolution on Rare Diseases, led by Rare Diseases International.

The WHA Resolution on Rare Diseases represents a historic opportunity to advance the rights, health, and well-being of over 300 million people living with a rare disease (PLWRD) worldwide. We hope the WHA will adopt this resolution in May and lead the development of a Global Rare Disease Action Plan.

Governments have already shown their commitment, with 26 countries co-sponsoring the Resolution and a number of countries hosting legislative debates on the benefits of a rare disease action plan for PLWRD and their community. Coordinated, sustainable efforts at international, regional, and national levels by all stakeholders can yield concrete results – from improved diagnostics and care pathways to advances in research and innovation. However, challenges persist, and we know that no single actor or region can meet the needs of the rare disease community alone. To illustrate the political momentum for action on rare diseases, Members of the European Parliament called for a European Rare Disease Action Plan at a hosted debate on 3 April.

A Global Action Plan should inspire countries and regions to develop, implement, and review their own action plans. These must bring together all relevant sectors of society, including patient organisations, healthcare providers, policymakers, and industry. Together, we can drive forward a truly integrated approach to rare diseases that ensures no one is left behind.

Download the complete statement here.