In a world where rare and complex diseases often struggle to find a voice, the EDS ECHO program stands as a beacon of success. As we celebrate its 5th anniversary, we reflect on a journey that began in April 2019, transforming education and care for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) globally.
EDS ECHO was established to address the need for specialized knowledge and care strategies for often misunderstood EDS and HSD conditions. Using the Project ECHO® model’s “all teach, all learn” philosophy, it aims to move knowledge, not people, creating a scalable impact on health. This model fosters collaboration, empowering healthcare professionals to enhance their skills while maintaining patient care responsibility.
Starting with two hubs at Indiana University Health, Indianapolis, USA, and The Royal Society of Medicine, London, UK, EDS ECHO expanded globally, attracting healthcare professionals from all disciplines. Through case-based discussions and sharing of the latest knowledge, EDS ECHO has fostered a rich learning environment, encouraging professional growth, networking, and collaboration.
From its inception, EDS ECHO broke new ground as the first Rare Disease ECHO, the first to offer ECHO Events, and the first to offer an Advocacy ECHO, laying the foundation for a global educational movement. Over five transformative years, the program has provided 847 CME (Continuing Medical Education) credits, demonstrating its commitment to continuous education and professional development.
Over five years, EDS ECHO has achieved remarkable milestones, conducting 760 sessions, offering over 1106 learning hours and involving 2100 attendees from 45 countries. This engagement has created an international community of healthcare providers offering superior care to those with EDS and HSD. Furthermore, the introduction of advocacy programs and sessions for community leaders and educators has broadened the scope of EDS ECHO, making it a comprehensive resource for both healthcare professionals and the wider community affected by these conditions.
EDS ECHO’s global footprint includes 23 programs delivered from hubs in North America, Europe, and Australasia, offering specialized knowledge and fostering a supportive community for healthcare professionals and patients alike. With 110 speakers and 690 presentations, EDS ECHO has become a knowledge nucleus. Over five years, 520 case studies have been presented, illustrating the complex and varied nature of EDS and HSD.
Testimonials from participants echo the program’s transformative effect. Healthcare professionals have shared stories of improved clinical reasoning, enhanced screening processes, and increased empathy and understanding for their patients’ conditions. The knowledge and tools gained through EDS ECHO have enabled them to make significant advancements in diagnosing and treating EDS and HSD, profoundly affecting their practice and patient care.
The EDS ECHO Summits have also marked a significant advancement in the program’s outreach efforts. With a total of 6876 virtual attendees and an average of 625 participants per event, these summits have become a pivotal platform for education and engagement. The high percentage of first-time attendees at each event reflects the program’s growing appeal and its role in attracting a new audience to the cause.
The success of EDS ECHO has not gone unrecognized. In 2023, the program was honored with the “Project ECHO Excellence Award”, a recognition of its outstanding contributions to education and healthcare. Research outcomes further underscore its effectiveness, with participants reporting increased knowledge, confidence, empathy, and networking opportunities. These outcomes have translated into real-world benefits, including increased patient numbers and complexity, showcasing the program’s ability to prepare healthcare professionals for the challenges of rare disease care.
Looking to the future, brand new programs for healthcare professionals and community members are in development, broadening EDS ECHO’s scope and reach. These initiatives, along with ambitious goals to educate and mentor healthcare professionals, individuals, and caregivers, aim to decrease the time to diagnosis and improve access to comprehensive care.
As EDS ECHO celebrates this anniversary, it stands as a movement built on collaboration, education, and dedication, committed to improving the lives of those affected by EDS, HSD, and related conditions. Here’s to many more years of empowerment, growth, and transformation as EDS ECHO continues to guide the rare disease community.
