“Meet Ergomed Patient Organization Representative Board Sharing Views on Patient-Centricity”

The Voice of the Patient - Episode 1


The term “patient-centricity” is very present in the pharmaceutical industry and clinical research alike. All companies insist on a patient-focused approach but have varying viewpoints. The goal of this podcast series, “The Voice of the Patient”, is to share these viewpoints from the perspectives of all stakeholders involved in the clinical trial process, especially involving rare diseases. The first podcast of this series will introduce you to Ergomed’s patient-centricity approach by sharing the views of our Patient Organization Representative Board members. Join our host Bojana Mirosavljevic as she asks one seemingly simple question; “What does patient-centricity mean to you?”.

The Voice of the Patient
The Voice of the Patient
Episode 1: Meet Ergomed Patient Organization Representative Board Sharing Views on Patient-Centricity

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:

Elin Haf Davies, Ph.D. – Ergomed, Patient Organization Representative Advisory Board

Elin founded Aparito in 2015, a digital health company focused on developing patient-centric digital outcomes to support decentralized clinical trials. Elin also serves as the Chair of the Board of Trustees for Metabolic Support UK, a patient advocacy group supporting 400 rare inherited metabolic diseases.

Inês Alves, DMV – Ergomed, Patient Organization Representative Advisory Board

Inês Alves is a patient expert in rare bone diseases. She is the creator of Beyond Achondroplasia as well as the founder and president of ANDO Portugal, the Skeletal Dysplasia National Association. Being a EUPATI fellow and EUPATI Fundamentals trainer, Ines serves as Vice-president of EUPATI Portugal and Patient representative at ERN BOND (European Reference Network for Rare Bone disorders). As a mother of 3 children, one of which has achondroplasia, a rare bone condition, she is involved in a number of EU initiatives aimed at improving research, diagnostics, and treatment for rare disorders.

Rick Thompson – Ergomed, Patient Organization Representative Advisory Board

Dr. Rick Thompson, CEO of Findacure. Findacure is a UK charity that is building the rare disease community in order to drive research and help develop treatments. Findacure aims to transform the world’s understanding of rare diseases and the devastating impact they have on people’s lives.

Alan Thomas – Ergomed, Patient Organization Representative Advisory Board

Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia in particular. A patient, himself, with a ‘life-limiting’ rare disease, can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients. Alan has established a patient-driven and focused patient charity and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organizations, as well as taking part in many global conferences, in person or via the internet.

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