The Voice of the Patient - Episode 3
Introduction
This third episode concludes the “The Voice of the Patient” series, a podcast series sharing patient-centricity perspectives from the viewpoint of all clinical trial stakeholders. In the first episode, we explained Ergomed’s patient-centricity approach by sharing the views of our Patient Organization Representative Board members. We then continued this series by discussing what patient-centricity means to members of patient organization representatives from different parts of the world and what they consider to be a patient-centric pharmaceutical company. In the final episode of the series, our guest speakers will give us an insight into the opinion of pharmaceutical companies on patient-centricity and how these companies put patients at the forefront.
Please, join our host Bojana Mirosavljevic, Patient Engagement Officer at Ergomed, as she asks one seemingly simple question one final time; “What does patient-centricity mean to you?”.
Our Host
Bojana Mirosavljevic, Ph.D. – Ergomed, Patient Engagement Officer
Bojana’s role is to ensure that the patient’s perspective is always considered during a clinical trial. Educated as a chemist and embryologist, in 2010 Bojana founded and is still president of an association for children with rare diseases in Serbia. In 2013, Bojana lost her daughter Zoya to a severe and rare form of Batten disease, and today, Serbia has Zoya’s law, for the prevention and diagnosis of rare diseases, which has saved more than 3,000 lives.
Our List of Speakers:
Vivian Fernandez – REGENXBIO Inc., Senior Director and Head of Patient Advocacy
Vivian is the Senior Director and Head of Patient Advocacy at REGENXBIO Inc., a leading gene therapy biopharmaceutical company. With over 25 years of industry experience, Vivian leads global advocacy & engagement efforts at REGENXBIO across programs and has helped foster a culture that values community involvement and puts patients first. Her diverse drug development background and passion for working with patient communities give her a unique perspective on how patients can accelerate the development of new therapies.
Jennifer VanHoutan – Taysha Gene Therapies, Associate Director of Patient Advocacy
Jennifer VanHoutan joined Taysha Gene Therapies Patient Advocacy team working on neurodegenerative diseases in 2020. Jen is an integral part of the GM2 (Tay-Sachs Disease & Sandhoff Disease), CLN1 Batten disease, and SURF1-associated Leigh Syndrome programs at Taysha. She combines her rare disease experience as a mom, an advocate, and an industry to keep patients at the center of Taysha. Previously, Jen was a contractor with AveXis, prior to the launch of their Spinal Muscular Atrophy gene therapy approval, and worked with consumer marketing providing content support of commercial materials. Jen was passionate about sharing the stories of SMA families through workgroups and testimonial videos. In 2009, Jen’s family was introduced to a rare disease when her son, Noah, was diagnosed with CLN2 Batten disease after a sixteen-month diagnostic journey. Five months later, after testing her 3-year-old twins Jen and her husband were devastated to know that Laine also had CLN2 disease prior to the onset of symptoms. Before Laine’s diagnosis, they started a non-profit, “Noah’s Hope,” to raise funds for research and provide awareness for this life-limiting disease. Noah’s Hope continues to work closely with the Batten Disease Support & Research Association (BDSRA). Sadly, Noah passed from CLN2 in March of 2016, and Laine passed away in March 2018. But Jen continues to keep Noah & Laine close to her by working to change the lives of those living with rare diseases.
