In this episode, we are joined by leading expert Giovanni Baranello, a professor of paediatric neuromuscular disorders at Great Ormond Street Hospital Institute of Child Health, London. In his fast-paced role he manages competing clinical priorities involving the diagnosis and clinical management of children with different neuromuscular conditions. Professor Baranello gives his unique perspective and insight into Real World Data collection from Early Access Programs.

A patient-centered approach to early access programs puts patients, families, and caregivers first. This ensures their needs, preferences, and perspectives are at the heart of the process of bringing life-changing investigational medicines to current and future patients. For early access to be truly patient-centered, words need to be put into action. We must collectively recognize that patient-centricity cannot be achieved by just one approach or one voice.  

Hosted by Bionical Emas, ‘The Patient Voice’ podcast brings together stakeholders from across the early access space – from industry experts, patient advocacy organizations, and healthcare professionals to patients, families, and caregivers – as they share their experiences and insights. Discussing barriers and challenges, solutions and strategies, we explore how patient voices can be embedded in all stages of the ever-evolving early access landscape. 

As a global leader in Early Access Programs (EAP), Bionical Emas believes co-creation with the patient community and a patient and family-focused collaboration between all stakeholders is vital. Join us on this journey as we explore early access best practices and listen to insightful conversations from pioneers in this space. 

This podcast is strictly for informational purposes only and should not be considered to form any form of advice, including but not limited to medical advice. The opinions expressed in this podcast are those of Bionical Emas’s guests.

In this episode, we hear from two people who have lived experiences in advocating for their ethnicity, race, gender, and communities. They discuss their personal journeys and what led them to advocate for others to improve equality and diversity in today's clinical development landscape.  

Our host, Naomi Litchfield - Director of Patient Advocacy at Bionical Emas, speaks to Dr Sondra Butterworth, psychologist and founder of RareQOL, and Alfred Samuels, a prostate cancer survivor. They discuss everything from accessibility and language barriers to mental health and the value of community, demonstrating the importance of how the patient voice can contribute to true equality and diversity.   

A patient-centered approach to clinical development puts patients, families, and caregivers first. This ensures their needs, preferences, and perspectives are at the heart of the process of bringing life-changing investigational medicines to current and future patients. For clinical development to be truly patient-centered, words need to be put into action. We must collectively recognize that patient-centricity cannot be achieved by just one approach or one voice.

Hosted by Bionical Emas, ‘The Patient Voice’ brings together stakeholders from across the clinical development space – from industry experts, patient advocacy organizations, and healthcare professionals to patients, families, and caregivers – as they share their experiences and insights. Discussing barriers and challenges, solutions, and strategies, we explore how patient voices can be embedded in all stages of the ever-evolving clinical development process.

As a Contract Research Organization working across the clinical development pipeline, from early clinical research to post-trial and early access provision, Bionical Emas believes co-creation with the patient community and a patient and family-focused collaboration between all stakeholders is vital to the drug development process.

Join us on this journey to collaborative clinical development and listen to insightful conversations from pioneers in this space.

This podcast is strictly for informational purposes only and should not be considered to form any form of advice, including but not limited to medical advice. The opinions expressed in this podcast are those of Bionical Emas’s guests.

This episode of The Patient Voice explores the myriad of ways in which patients’ personal experiences, perspectives, and preferences can provide an informed voice for access to medicines.

In this episode, we hear from two people living with different conditions, experiences, and paths to diagnosis and treatment, as they discuss their respective patient journeys and the critical role patient engagement, and their own self-advocacy played along the way.

Our host, Naomi Litchfield - Director of Patient Advocacy, Bionical Emas, is joined by Sabina Kineen, living with a rare disease, and Maimah Karmo, a cancer survivor, who share how their experiences as patients led them to the work they both do now, advocating for and empowering other patients. Discussing everything from clinical trials and equitable access, to mental health and the value of community, Maimah and Sabina exemplify how much the patient voice matters.

A patient-centered approach to clinical development puts patients, families, and caregivers first. This ensures their needs, preferences, and perspectives are at the heart of the process of bringing life-changing investigational medicines to current and future patients. For clinical development to be truly patient-centered, words need to be put into action. We must collectively recognize that patient-centricity cannot be achieved by just one approach or one voice.

Hosted by Bionical Emas, ‘The Patient Voice’ brings together stakeholders from across the clinical development space – from industry experts, patient advocacy organizations, and healthcare professionals to patients, families, and caregivers – as they share their experiences and insights. Discussing barriers and challenges, solutions, and strategies, we explore how patient voices can be embedded in all stages of the ever-evolving clinical development process.

As a Contract Research Organization working across the clinical development pipeline, from early clinical research to post-trial and early access provision, Bionical Emas believes co-creation with the patient community and a patient and family-focused collaboration between all stakeholders is vital to the drug development process.

Join us on this journey to collaborative clinical development and listen to insightful conversations from pioneers in this space.

This podcast is strictly for informational purposes only and should not be considered to form any form of advice, including but not limited to medical advice. The opinions expressed in this podcast are those of Bionical Emas’s guests.

This episode of The Patient Voice discusses the importance of collaboration when designing a clinical trial and how the early engagement of all stakeholders is critical to long-term success. Hear from those actively involved in this process on how they're achieving exactly that for a rare genetic condition.

Our host, Naomi Litchfield - Director of Patient Advocacy, Bionical Emas, is joined by Shelly Meitzler - Director of Community Support & Outreach; Lisa Moore-Ramdin - Senior Director, Global Medical Affairs Lead; Pooja Takhar - Joint Chief Executive; and Sue Zanker - Medical Affairs Operations Director, Bionical Emas.