ONCE UPON A GENE - EPISODE 158

Medical Student - Urvi Gupta Joins the Global Genes Rare Compassion Program with Alexions Patient Advocacy Champion Wendy Erler

Wendy Erler is passionate about the caregiver and patient voice being at the forefront of her work at Alexion Pharmaceuticals. Urvi Gupta is a second year medical student, working with the rare disease community to shape her professional path forward in the medical field. In this episode, I talk with Wendy Erler and Urvi Gupta about the Global Genes Rare Compassion Program. 

EPISODE HIGHLIGHTS

Wendy, can you tell us about yourself?

I lead the patient advocacy team at Alexion, a pharmaceutical company focused on rare diseases. We work with physicians, patients, families and caregivers and my job is focused on elevating that partnership and bringing the patient and caregiver voice into everything we do. 

Urvi, can you share how you became involved with the rare disease community?

In a class called Clinical Correlation, we had a patient visit and they mentioned the Global Genes Rare Compassion Program, which matches up medical students with patients who have rare diseases to allow them to learn from each other. I've had three patient partners through that program and it's been amazing and inspiring to network with everyone in the rare disease community. 

Urvi, how essential do you think it is to experience a true doctor-patient relationship already?

So many patients say their course of treatment varies greatly based on how well their doctor listens to them. I think that's so important when it comes to rare diseases because it's not something you see often and when a patient presents a unique set of symptoms, they can't be brushed off. It's been helpful to experience and come to understand that the patient's perspective is the one that matters and what will help get a diagnosis. 

Urvi, in what ways are you interested in raising awareness of the rare disease community?

I would advise all medical students interested in rare disease to join the Global Genes Rare Compassion Program. There are a lot of other rare disease organizations always looking for help and there's likely a perspective you can offer. 

LINKS & RESOURCES MENTIONED

Global Genes Rare Compassion Program

https://globalgenes.org/compassion/

Alexion Pharmaceuticals

https://alexion.com/

Connor B. Judge Foundation

https://www.connorbjudgefoundation.org/

CONNECT WITH WENDY & URVI

Wendy Erler

https://www.linkedin.com/in/wendyerler/

Urvi Gupta

https://www.linkedin.com/in/urvigupta1/

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