Voices Yet to Be Heard: Including People with Disabilities in Clinical Research

By its very nature, clinical research must align with diversity, equity, and inclusion for it to be fair and representative. But the inclusion of people living with visible and invisible disabilities in clinical trials is often not the focus of the DEI discussion. Voices Yet to Be Heard: Including People with Disabilities in Clinical Research is a conversational webinar featuring a powerful panel of experts and advocates. Our panelists share their experiences participating in clinical research, accessibility challenges they have faced, and suggestions for systemic improvements.

Meet the Panelists

Pam Cusick | Moderator
Senior Vice President, Rare Patient Voice
Pam Cusick is an experienced research professional with more than 30 years of expertise in study design, implementation, and analysis. Her background in public health communications and research, coupled with her passion for patient advocacy, dovetail with Rare Patient Voice’s mission and vision. Pam hopes to expand Rare Patient Voice’s panels to include all patients and caregivers worldwide who want to share their opinions and impact their disease category. Pam earned a BA in Psychology from Sweet Briar College, and a MA in Psychology from the New School for Social Research. She is Past-President of the Board of Directors and Scientific Advisory Council Lead for the Horses and Humans Research Foundation. As Senior Vice President, Pam’s focus is on the continued growth and success of RPV, with an eye on client services, business development, and oversight of patient outreach, panel management, and marketing.

Richie Kahn | Panelist
Co-Founder & Principal at Canary Advisors
Richie is a health policy professional by training, clinical researcher by trade, and patient advocate by necessity. A rare disease patient and clinical trial participant himself, Richie is intensely passionate about better incorporating the patient perspective into the clinical development process. Through his work at Canary Advisors, he assists organizations set on patient-focused drug and device development by serving as an early-stage patient advocacy function; supporting regulatory patient advocacy; crafting patient-facing market access and reimbursement strategies; and providing clinical trial support services.

Sabina Kineen | Panelist
Rare Disease Patient, Caregiver, and Advocate

Sabina Kineen is a rare disease patient, caregiver, and advocate with a deep passion for health equity, mental health, and patient engagement. Diagnosed with Fabry Disease in her teens, Sabina has spent numerous years advocating for the rare disease community. She is a vocal advocate for mental health, recognizing the critical importance of addressing the psychological impact of living with a rare disease. Sabina is also a strong proponent of health equity and strives to ensure that every patient has access to the care, including clinical trials, they need and deserve.

Sabina’s twelve years of experience as a clinical trial participant gives her a unique perspective and she believes in the power of patient engagement. She recognizes that patients are experts in their own experiences and should have a seat at the table in decisions that affect their care and drug development. 

Sabina has spoken at numerous conferences, served on Patient Advisory boards, serves as a Fabry Champion and Community Ambassador, sharing her story as a patient and caregiver and advocating for the needs of the rare disease community. Through her advocacy work, Sabina aims to raise awareness, promote understanding, and create meaningful change for rare disease patients and their families.

Ash Rishi | Panelist
Founder and Chair of the Board of Trustees, Demand Diversity 

Ash Rishi is a health equity advocate and a leader in patient and community engagement and has been working to improve strategies globally while founding and running the creative health engagement agency, COUCH Health.

Building on his personal ambitions, Ash founded Demand Diversity, initially as a campaign for change, to raise awareness around representation of patients in clinical research. The work Demand Diversity has done over the past few years has led to Ash setting up Demand Diversity as a non-profit initiative to educate and raise awareness of clinical research within under-served populations – with particular focus on improving trust.

Ash’s overall ambition is to make research more equitable, so all communities benefit from the advancement from medicine.

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