Patient Engagement

Imara is working to develop novel therapies for sickle cell disease and beta-thalassemia. As they advance late-stage clinical development, the team wanted to offer more immediate support to patient communities. We worked with Imara to brand and promote their Real Impact program, which initially offers grants to nonprofits working closely with families affected by these rare blood disorders.

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Dyne Therapeutics’ focus on rare muscle diseases includes Duchenne Muscular Dystrophy (DMD), a rare genetic disorder characterized by muscle wasting that worsens over time. We worked with the Dyne team to tell the story of 21-year-old Ravi Lipman, a political science student who lives with DMD. Although Ravi is a self-proclaimed introvert, he is also a dedicated advocate for people with disabilities.

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Gamida Cell was eager to promote understanding of alternatives to traditional bone marrow transplants, including the investigational cell therapy they are developing. We spent a day with two-time cancer survivor Stacey Khoury and her husband, Rick, to learn more about her personal journey and her decision to participate in a clinical trial of the investigational therapy.

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This comprehensive campaign supporting enrollment in Zafgen’s natural history study of Prader-Willi syndrome included a dedicated website, media outreach, social media and close partnership with patient organizations. Within six months, the study had exceeded its target enrollment of 500.

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LogicBio Therapeutics sought to raise awareness of methylmalonic acidemia (MMA), a rare genetic disorder. We spent a day with Yusuf and Khadija Patel, who are living with MMA, at their home in Delaware. The resulting narrative and photos helped readers see beyond the medical terminology and empathize with the patient experience.

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We conducted interviews with families around the world who are affected by the rare disease aspartyglucosaminuria (AGU) to understand what they wanted from a patient-focused website. The outcome: a site that explains the biology of AGU; walks families through disease management; explains current research; links to important resources; and shares the personal experiences of patients. Families have praised the site as a one-of-a-kind resource for the AGU community.

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We designed Spark Therapeutics’s Eye Want 2 Know campaign to raise awareness and understanding of genetic testing for inherited retinal diseases. The website, designed to be accessible to visitors with limited vision, was complemented by aggressive media outreach and a social campaign that quickly rang up more than 50,000 impressions. One metric of success: In the first six weeks, the “Find a provider” tool was used more than 200 times.

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We designed and executed the “All in for CF” campaign to serve as a rallying cry for Vertex and its community partners. The campaign included a striking mosaic made up of “I’m all in for CF” selfies; dedicated website pages; patient narratives and videos; patient scholarships and mentorship programs; close coordination with advocacy groups; and a highly visible conference presence. A targeted social media campaign at the 2018 NACFC conference put Vertex’s core messaging in front of a highly relevant audience of nearly 80,000.

Facioscapulohumeral muscular dystrophy (FSHD) is characterized by the progressive loss of skeletal muscle, which causes profound weakness throughout the body over time. In honor of World FSHD Day in June 2020, Dyne Therapeutics hosted a fireside chat with Howard Chabner, who lives with FSHD. Howard shared his 45 years of experience as a lawyer, a disability rights advocate and an art aficionado.

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Huntington’s disease often affects multiple generations in the same generation. Jonathan knows that all too well: His father and brother died from the disease, and genetic testing recently confirmed that he has it as well. Jonathan and his mother, Gina, told their story to underscore the urgent need for new therapies.

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