Alexandra Heumber Perry | Chief Executive Officer
Rare Diseases International
Alexandra Heumber Perry has been appointed Chief Executive Officer of Rare Diseases International (RDI ) in June 2023. She brings 20 years’ experience in global health with demonstrated capabilities in patient advocacy and multi-stakeholder partnership, focusing initially on neglected and vulnerable patient populations, notably with Drugs for Neglected Diseases, Médecins sans Frontières, and Union for International Cancer Control and more recently advocating on behalf of specific communities including neurology, myalgic encephalomyelitis, obesity, and haemophilia. Operating out of Geneva for 10 years following 10 years in Brussels, Alexandra conveys to RDI her considerable experience leading initiatives with multidisciplinary and remote teams and working with international and European institutions, government representatives from across the world, patient groups, and the private sector.
Appearances:
Day 1 - World Orphan Drug Congress USA 2024 @ 12:05
Towards a World Health Assembly Resolution on Rare Diseases
Day 2 - World Orphan Drug Congress USA 2024 @ 08:50
Chair opening remarks
Day 2 - World Orphan Drug Congress USA 2024 @ 13:45
Why Investing in Rare? Innovative Solutions for Health Systems Financing
Rare diseases pose unique challenges to healthcare systems worldwide due to their low prevalence and complex treatment requirements. Traditional financing mechanisms often fail to adequately address the needs of patients with rare diseases, leading to disparities in access to treatment and care. However, innovative solutions are emerging to bridge this gap and ensure equitable access to healthcare for individuals affected by rare diseases. This session will explore the importance of investing in rare diseases and showcase innovative financing strategies that can support health systems in providing comprehensive care to patients with rare diseases.
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