Geneva, Switzerland – May 2025
Lara Bloom, President and CEO of The Ehlers-Danlos Society, delivered a powerful message this week from the World Health Assembly, highlighting the ongoing global challenges faced by individuals living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
In a heartfelt reflection shared on social media, Lara drew attention to the deeply rooted barriers in healthcare systems around the world that prevent timely diagnosis and adequate care. “Many face years—sometimes decades—without a diagnosis, navigating a system that overlooks or misunderstands their symptoms,” she wrote. “Even with a diagnosis, access to knowledgeable healthcare professionals and coordinated multidisciplinary care remains limited in most parts of the world.”
Her remarks also emphasized the critical lack of access to genetic testing, especially for those living with the rarer types of EDS, a challenge that is particularly acute in underserved and low-resource countries.
The mental health impact of delayed or fragmented care remains a key concern. “Pain is dismissed, symptoms are fragmented across specialties, and the mental health toll is frequently ignored,” she stated. “The result is not just a medical crisis, but a human one.”
Attending the Assembly as Vice Chair of the Board for the International Alliance of Patients’ Organizations (IAPO), Bloom expressed gratitude for the organization’s support in navigating the WHO and UN landscape. “It is through my position with IAPO that I’ve been able to bring EDS and HSD to the global stage, opening the door to some incredibly exciting conversations this week that I truly believe will pave the way for systemic change.”
Her presence at the World Health Assembly signifies a major step forward in international recognition and advocacy for EDS and HSD. As Lara concluded: “We keep going. We stay loud. We break down the barriers—together.”
The Ehlers-Danlos Society remains committed to continuing this vital work—amplifying the voices of the community, driving change, and fighting for equitable care across the globe.
