Diversity, Equity and Inclusion in Rare Disease Clinical Trials: Beyond Buzzwords

Life Sciences, Clinical Trials,
  • Tuesday, September 13, 2022 | 10am EDT (NA) / 3pm BST (UK) / 4pm CEST (EU-Central)
  • 60 min

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 the featured speakers 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 in rare 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


Laura Iliescu, ICON

(Moderator) Laura Iliescu, MSc, Director, Patient Advocacy Strategy, ICON

Laura Iliescu has 20 years of experience in development and commercialization of therapies, and patient-centered healthcare services. She has held strategic development roles in leading 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 respiratory indications among others. Within ICON’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 Master of Human Factors and Ergonomics from the University of Nottingham.

Message Presenter
Dr. Richard Bedlack, Duke ALS Clinic

Dr. Richard Bedlack, MD, PhD, Professor of Neurology at Duke and Director of the Duke ALS Clinic

Dr. Richard Bedlack is currently a Professor of Neurology at Duke and Director 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 master’s in clinical research science from Duke University.

Message Presenter
Jocelyn Ashford, BridgeBio

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 of Engineering Management and Social & Organizational Change from Northwestern University.

Message Presenter
Teneasha Washington, The Washington Group

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).

Message Presenter
Louisa Roberts, ICON

Louisa Roberts, VP Innovative Partnerships, ICON

Louisa Roberts leads a global team of four, leveraging partnerships to implement innovation that accelerates clinical trials for sponsors and supports ICON’s Healthcare Intelligence strategy. She works across technical, scientific and operations leadership to develop and implement partnerships that expand access to clinical research and create value for sponsors. 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 ground-breaking 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 master’s in chemistry from the University of Edinburgh (UK) and an MBA from the Tuck School of Business at Dartmouth.

Message Presenter
Sumaira Ahmed, The Sumaira Foundation

Sumaira Ahmed, Founder & Executive Director, The Sumaira Foundation

Prior to working in healthcare marketing/business development, Sumaira worked 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 trained Kathak dancer (Indian classical dance form) and has performed in notable venues including Madison Square Garden, the Kodak Theatre, Santiniketan and the Rudolf Steiner Theatre. In the summer of 2014, Sumaira was diagnosed with sero-negative neuromyelitis optica. Within two months of her diagnosis, she founded The Sumaira Foundation (TSF) dedicated towards generating global awareness, finding a cure, patient advocacy and creating communities of support for NMOSD and MOG-AD. In September 2021, Sumaira was honored with WEGO Health’s “Best Kept Secret” Award recognizing her advocacy work in rare disease.


Message Presenter

Who Should Attend?

Scientists, consultants, and other scientific staff and personnel 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

What You Will Learn

Attendees will learn:

  • Barriers and effective strategies to mirroring the patient community make-up in rare 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

Xtalks Partner


ICON plc is a world-leading healthcare intelligence and clinical research organisation. From molecule to medicine, we advance clinical research providing outsourced services to pharmaceutical, biotechnology, medical device and government and public health organisations. We develop new innovations, drive emerging therapies forward and improve patient lives. With headquarters in Dublin, Ireland, ICON employed approximately 40,500 employees in 119 locations in 53 countries as at June 30, 2022. For further information about ICON, visit: www.iconplc.com.

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