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SES webinar recap

June 28, 2023

At SES, we recently hosted our first webinar, with the aim of educating our industry supporters on the importance of incorporating the patient voice within IME.

The 45-minute webinar included the thoughts and opinions of: 

  • Carl Harrington (a patient with Waldenstrom’s macroglobulinemia [WM] and past President and Chairman of the Board for the IWMF),​ who expressed his mission was to support all patients with WM and that it’s incredibly important to have the opportunity to advocate for the patient voice.  
  • Lyndsy Ambler (a patient representative on the Lupus Hub Steering Committee)​, who wants a holistic approach to the input of IME, as patients have the best insight into understanding the reality of living with the condition.  
  • Ricard Cervera (Lupus Hub Chair and Head of the Department of Autoimmune Diseases, Hospital Clínic, Barcelona), who explained how regarding lupus, his hospital is a champion in incorporating the patient voice, describing it as paramount importance and how it has enabled him to uncover two types of manifestations within patients; the second being Type 2: fatigue, aches and pains, and brain fog. ​  
  • Cheryl Petruk (MPN–PAG Collaborative Steering Committee member), who was the sole carer for her husband who sadly passed from MPN. Cheryl expressed that it is vitally important to include patients in all communications as it is their choice and their life.

The panel discussed from their perspective the key points to take note of regarding the logistics of making the above a reality, and shared examples of how SES are supporting them in doing this via our educational initiatives. Please follow the link below to watch the discussion take place!

Carl: “SES has been a perfect partner in helping us achieve our goals in global patient initiatives and expanding doctor awareness, followed by patient awareness”. 

Cheryl: “Through SES and our collaborative efforts, it’s about educating patients, helping them help their doctors, and to live better with the disease and have a better quality of life.” 

SES will be running more industry-directed webinars soon; please look out for future registration forms.

If you are interested in speaking to SES about supporting our educational initiatives and incorporating the patient voice, please get in touch: 

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