Patient Experience Research & Education
Created - Wednesday, September 9, 2026
Challenge
Individuals living with a rare disease, and their caregivers, often feel isolated and lack firsthand, relatable insights about living with their condition and managing treatment. Traditional educational materials and support rarely capture the emotional and practical realities that families face. Clients needed to provide patients and caregivers with the opportunity to connect 1:1 with someone who has shared, real-world experience.
Outcome
In one program, 3/4 current mentors began as mentees, indicating the impact of the program. In another program, 65+ referrals have been processed over a 2-year period.
“… literally changed my outlook on my life as a patient and helped me out of some dark places as an isolated, struggling rare disease patient.” –Patient feedback on a mentor program.
“… had the most impact on me of all the support programs offered.” –Patient feedback on a mentor program.
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Working in partnership with our clients, we embrace our different perspectives and strengths to deliver fresh thinking and solutions that make a difference.
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