Advocating for Rare Patients with Wendy Erler

August 3, 2022

by Dr. Stan Crooke


“A patient focused approach to medicine”

Stan speaks with one of the leading rare-disease patient advocates, Wendy Erler, about her role in improving the treatment process of patients with rare mutations. From her involvement with every major platform of drug discovery to her position as vice president and global head of patient experience, advocacy, and patient insights for Alexion Astra Zeneca Rare Disease, Erler has always ensured that a patient’s voice is clearly heard.

On This Episode We Discuss:

  • Wendy’s work at GlaxoSmithKline, Biogen and Waves Life Sciences
  • Importance of bringing patient voices into therapy
  • Working with the ALS and SMA communities
  • The power of ASOs
  • Alexion and their support for n-Lorem
  • STAR and Leap: programs to deliver on patient’s needs
  • Personalized medicine is the future
  • Constructing a patient support community

Watch on YouTube:

Wendy Erler started her career in the 90s with the pharmaceutical company, GlaxoSmithKline. It was around that time when the drug discovery and development industry began to swiftly change. The question of incorporating a patient’s voice into research became important. That’s where her passion for patient advocacy began. Today, she’s building frameworks and creating an environment that ensures patient’s insights positively influence corporate decision making surrounding their needs.

Wendy joined Alexion three years ago, and since has worked on a variety of programs to change behaviors internally to better deliver on the needs of patients. STAR (Solutions To Accelerate Results) is a program that encourages the streamlining of innovation, promotion of discussion, and collaboration between Alexion colleagues and stakeholders, and external patients and physicians of all backgrounds to develop solutions that have a greater impact on patient lives. Another program, Leap, inserts employees into a simulated experience of the patient journey; such as receiving a diagnosis and the process of preparing for and partaking in a clinical trial. This way, staff can understand the everyday situations people go through from the patient perspective.

Wendy is excited about the future n-of-1 treatment and points out the advantages of ASOs. She discusses that, opposed to other drug discovery platforms, ASOs can be easily altered with a clearer understanding of the expected results. Also, the time it takes to develop an ASO is quick in comparison to other drug options! n-Lorem is discovering quality ASOs for patients, making a difference, and building a community while doing it. Alexion is committed to helping patients with rare diseases and has generously supported n-Lorem’s mission of providing personalized experimental ASO medicines to treat nano-rare patients – for free, for life.

Wendy Erler is the vice president and global head of patient experience, advocacy, and patient insights for Alexion Astra Zeneca Rare Disease, as well as a board member for the Huntington’s Disease Society of America, the Jett Foundation, and Rare-X. You can find Wendy on LinkedIn:


Hosted by: Dr. Stan Crooke.
Videographer: Jon Magnuson of Mighty One Productions.
Producers: Kim Butler, Colin Delaney, Kira Dineen, Jon Magnuson, Andrew Serrano and Amy Williford.

More from n-Lorem:

See what else we are up to on Twitter, Instagram, Facebook, Linked In, YouTube and our website, If you enjoy this episode, please rate and review us, as it helps others find our podcast. Questions/inquiries can be sent to [email protected].

Download Transcript:

To follow along with this interview, download the transcript below.


Listen to our next interview:

Anna’s Story of Hope and Help with Dr. Neil Schneider and Sonja Kaempfer

We cannot do
this alone

Together we are changing the world—
one patient at a time

We hope that you join us on this journey to discover, develop and provide individualized antisense medicines for free for life for nano-rare patients. The ultimate personalized medicine approach – for free, for life.

We need your support

Join us on our Corps of Discovery of the mind and heart. Help us bring hope and potential help to nano-rare patients today. For free, for life.

Follow us on social for updates on our latest efforts