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Patient Centricity – Patient advocacy insights from ultra-rare disease caregivers

June 17, 2020 @ 3:00 pm 3:40 pm

Speakers:  Alec Pettifer, SuAzio and Al Triunfo, Mowat-Wilson Syndrome Foundation

Convenor: Sarah Phillips, IQVIA

This webinar will present key results from a first-of-its-kind online survey of ultra-rare disease patients and caregivers. The study benchmarks the use of digital health apps within the community, and attitudes about app-related data sharing and security issues. Rare disease caregivers also ranked mobile app features in terms of their perceived value. In addition, respondent’s willingness to participate in patient-focused drug development and pharma-sponsored clinical trials is analysed.

Alec and Al will discuss the design and execution of the project as a model for future studies, as well as the value of the resulting insights to the partnering non-profit rare disease advocacy organisation.

Alec and Al will tailor their webinar to the post COVID world in order to ensure that it is relevant to an ever- changing patient environment.

There will be an opportunity for discussion at the end of the webinar using the Breakout Rooms function within Zoom – allowing you to interact with colleagues and our speakers.

This is a member only event and is free to attend for members.


Alec Pettifer

Alec Pettifer

Consultant, SuAzio

Alec delivers actionable insights to drive growth and performance as a business consultant for the pharmaceutical and life science industry. With hundreds of successful projects completed, Alec joined suAzio consulting in 2017 to leverage direct stakeholder engagement to optimize co-creation of digital health solutions, including patient support programs.

Alec is passionate about patient centricity and brings over 25 years’ experience at the cutting edge of patient insights to support patient-focused drug development and commercialization. Alec is privileged to have lived and worked in Europe, Asia and North America throughout his career.

Al Triunfo

Al Triunfo

Board of Directors, Mowat-Wilson Syndrome Foundation

Al Triunfo is a leadership development consultant and executive coach with 37 years of experience in the pharmaceutical industry, including several years of service at the executive team level. He has successfully led field sales organizations and internal departments such as marketing, market access and analytics.

Al recently joined the Board of Directors for the Mowat-Wilson Syndrome Foundation. His grandson Logan was born in January, 2010 and diagnosed with Mowat-Wilson Syndrome 8 months later. Al firmly believes in the need for the type of support the Mowat-Wilson Syndrome Foundation strives to provide and hopes to use his relationships in both the medical and business communities to advance the goals of the Foundation.