Empowering Rare Disease Patient Champions

The Challenge

The primary challenge was to identify, train, and develop a network of unbranded patient "Champions" who felt capable and confident in proactively communicating, educating, and advocating about their specific experiences with Fabry and Pompe disease.

Our Approach

Working alongside US and International teams, we created a long-term program featuring a bank of over 20 Fabry and Pompe Champions spanning more than 10 countries. We hosted an interactive, in-person international workshop in the UK to onboard the Champions and teach them storytelling skills. We also developed a train-the-trainer toolkit for local teams, created unique patient stories and biographies, and hosted ongoing online capacity-building workshops and "coffee chats" to encourage networking.

The Outcome

The initiative successfully created a long-term, interactive program that empowered these Champions to confidently share their journeys. Patient groups have integrated these unique stories onto their websites, and the Champions now actively participate in numerous internal and external engagement opportunities—such as Lunch and Learns, external congresses, and video messages—to educate stakeholders on living with a rare disease.

1. 2 rare diseases—Fabry and Pompe disease—were the central focus of this global disease awareness and patient empowerment initiative.
   
   

2. 20+ Fabry and Pompe Champions were successfully identified and trained to confidently share their journeys and advocate for themselves.
   
   

3. 10+ different countries are represented across this international network of patient Champions