The rarity of each individual rare disease introduces many unique challenges and complexity in clinical research including barriers to achieving representative trial populations and equitable access to trials. Focused effort and dedicated action are essential to create an equitable clinical research environment.

Join us for an in-depth, interdisciplinary panel discussion of research leaders and community advocates from BridgeBio, the Duke ALS Clinic, RARE-X and the Sumaira Foundation to learn about:

  • Barriers and effective strategies to mirroring the patient community make-up inrare disease clinical trials

  • Challenges that rare disease Patient Organisations are tackling to improve diversity, equity and inclusion (DE&I) in their own communities

  • Consequences of getting it ‘wrong’ in the clinical stage and beyond

Moderator:

Laura Iliescu, MSc

Director, Patient Advocacy Strategy, ICON

Laura Iliescuhas 20 years of experience in development and commercialization of therapies, and patient-centered healthcare services. She has held strategic development roles inleading pharmaceutical, biotechnology, CRO and clinical homecare organizations throughout every phase of the product lifecycle from preclinical to beyond patent expiry. She has deep experience in rare metabolic,neuromuscular and respiratoryindications among others. WithinICON’s Center for Rare Diseases, Ms. Iliescu advises clinical-stage rare disease focused companies on patient-centered clinical strategy to optimize both study efficiency and the experience of patients and caregivers. Ms. Iliescu holds a Masterof Human Factors and Ergonomics from the University of Nottingham.

Speakers:

Dr. Richard Bedlack, MD, PhD

Professor of Neurology at Duke and Director of the Duke ALS Clinic

Dr. Richard Bedlack is currently a Professor ofNeurology at Duke andDirector of the Duke ALS Clinic. He has won awards for teaching and patient care, including best Neurology teacher at Duke, Health Care Hero, Strength Hope and Caring Award, America’s Best Doctor, the American Academy of Neurology Patient Advocate of the Year and the Rasmussen ALS Patient Advocate of the Year. He started an ALS Clinical Research Learning Institute which empowers patients to be even more effective research partners. He designs and conducts unusually inclusive virtual ALS clinical trials. Dr. Bedlack completed his MD and PhD in Neuroscience at UConn and a Masters in Clinical Research Science from Duke University.

Jocelyn Ashford

Head of Cardiorenal Global Patient Advocacy, BridgeBio

Jocelyn Ashford is the Head of Cardiorenal Global Patient Advocacy at BridgeBio, a clinical-stage biopharmaceutical company focused on genetic diseases and cancers with clear genetic drivers. She is dedicated to strengthening relationships with patient advocacy organizations and the broader community. Before joining the BridgeBio family, Ms. Ashford was at Genentech where she led advocacy relations efforts to address the unmet needs in various rare and not-so-rare Respiratory and Immunology communities. Ms. Ashford holds a Bachelor’s in Industrial Engineering & Economics and a Master’s of Engineering Management and Social & Organizational Change from Northwestern University

Teneasha Washington, PhD, MPH

Director/Founder, The Washington Group - Diversity Equity and Inclusion Lead, RARE-X

Ms. Washington serves as the lead of diversity initiatives at RARE-X and is the Founder of the Washington Group, a consulting agency. She is a QM-certified professor teaching undergraduate and graduate students in the UAB School of Public Health on community organizing, social and behavioral sciences, intervention development, and research methods. Her current research focuses on serving as the lead of community engagement efforts for the Mindfulness, Exercise, Nutrition, to Optimize Resilience (MENTOR) program. Ms. Washington holds degrees from UAB (BS, Biology; MPH, Public Health; PhD, Health Education/Health Promotion, Public Health; Present MBA, expected graduation summer 2022).

Louisa Roberts

VP Innovative Partnerships, ICON

Louisa Roberts leads a global team of 4, leveraging partnerships to implement innovation that accelerates clinical trials for Sponsors and supports ICONs Healthcare Intelligence strategy. She works across technical, scientific and operations leadership to develop andimplement partnerships that expand access to clinical research and create value forSponsors. Prior to ICON Ms. Roberts was VP, Head of Commercial Strategy & Partnerships at Genuity Science, Cognitive Solutions Market Leader at Watson Health, and consultant with IBM and IDEA Pharma. Ms. Roberts has defined and delivered groundbreaking engagements applying artificial intelligence / machine learning to drug discovery and clinical research and improved decision making in biopharma business critical functions, including R&D, manufacturing, new product development, marketing, managed markets and sales.Ms. Roberts holds a Masters in Chemistry from the University of Edinburgh (UK) and an MBA from the Tuck School of Business at Dartmouth.

Sumaira Ahmed

Founder & Executive Director, The Sumaira Foundation

Prior to working in healthcare marketing/business development,Sumairaworked as an actress/model in Bangladesh & India starring in music videos, a health-related documentary, and was the lead actress in an English-language independent film. She is a classically-trained Kathak dancer and has performed in notable venues including Madison Square Garden, the Kodak Theatre, Santiniketan, and the Rudolf Steiner Theatre.In the summer of 2014,Sumairawas diagnosed with sero-negative neuromyelitis optica. Within two months of her diagnosis, she founded TheSumairaFoundation (TSF) dedicated towards generating global awareness, finding a cure, patient advocacy, and creating communities of support for NMOSD and MOG-AD.In September 2021,Sumairawas honored with WEGO Health's "Best Kept Secret" Award recognizing her advocacy work in rare disease.

Target Audience

This programme is intended for anyone involved in the rare disease and/or drug development space including personnel from:

  • R&D
  • Patient Advocacy & Engagement
  • Clinical operations
  • Clinical development
  • Sales/Marketing
  • Executives
  • Directors
  • Product managers
  • Senior managers
  • Clinical research staff
  • Scientists & consultants