Case Study
Bringing together advocacy organizations to elevate focus on a rare disease.
Inflection Point
Our biotech client had recently acquired the US rights for a new product in a rare disease. With no single advocacy group dedicated to the condition, our client set out to establish new relationships with adjacent and umbrella organizations. The goal was to increase focus on the rare condition, while also building a strong foundation ahead of a commercial launch.
How We Helped
We began by identifying organizations that affected patients might turn to support, and then worked with our client on a coordinated outreach effort. We defined a vision for a consortium that would allow disparate organizations to collaborate over the long-term in support of patients with this rare condition.
To translate initial outreach into tangible outcomes, we convened a series of co-creative workshops with patients, caregivers, and representatives from advocacy organizations. Together we learned from the patients’ lived experience and built practical, patient-friendly resources about the condition.
The materials were finalized with the logos of the eight participating advocacy organizations alongside our biotech client, representing the collaborative nature of their development. The completed materials filled a real gap for patients, as information about the condition was previously very limited.
This has long been an area with no information for families. I can’t tell you how thrilled we are to finally have something.
— Patient Advocacy Organization
Outcomes
Working closely with the advocacy organizations on dissemination, the materials received an enthusiastic reception from the patient community. As unbranded disease state education, the materials created an important foundation for commercialization. Moreover, once the materials were completed, they were a catalyst for additional relationships. Ultimately, 20 different organizations participated in disseminating the materials, raising awareness and providing additional support to the patients with this rare condition.
