Lara Bloom | President and CEO
The Ehlers-Danlos Society
Lara Bloom is President and CEO of The Ehlers-Danlos Society, where she leads global efforts to raise awareness of rare, chronic, and invisible conditions—specializing in Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. She spearheads international medical collaboration, research funding, education, and advocacy. A passionate leader in patient engagement and global collaboration, Lara was appointed Academic Affiliate Professor of Practice at Penn State College of Medicine in March 2020, marking a decade of work in patient advocacy. She is widely published and a sought-after keynote speaker at conferences, policy forums, academic lectures, and corporate events. Lara serves as Chair of the Board of the International Alliance of Patients’ Organizations (IAPO) and is a Board Member of Genetic Alliance UK. In June 2025, she received the prestigious Made with Patients Award at the Patient Engagement Open Forum (PEOF), honoring her leadership in shaping truly patient-centered global advocacy. She was also named a 2025 D-30 Disability List Honoree by Diversability, recognizing her as a prominent voice in the disability and rare disease space.
Appearances:
Day 1 - World Orphan Drug Congress USA 2026 @ 15:30
Integrating Mental Health into Rare Disease Programs: What Industry Can Do and Where to Start
Mental health is a critical—but often underdeveloped—component of rare disease care, despite growing recognition of its impact on patients, caregivers, and clinical trial participation. This panel brings together psychologists and patient advocates to help industry leaders understand why mental health must be integrated into rare disease programs and how to do so in a practical, phased way. Through real-world examples, speakers will outline where industry can start, how to prioritize investments, and how to design mental health support that is meaningful, scalable, and aligned with patient needs across programs and clinical trials.
Objectives:
- Understand the mental health challenges uniquely faced by rare disease patients and caregivers—and why they directly affect outcomes, engagement, and trust
- Learn a phased approach to incorporating mental health into rare disease organizations and clinical trial programs (from early awareness to scaled support)
- Identify practical, patient-informed actions industry can take when mental health is budgeted for but lacks a clear implementation plan
- Gain insight into how psychologists and patient advocates define meaningful mental health support—and how industry can avoid common missteps
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