Maria Pandolfo, Vice President, Patient Services, Catalyst Pharmaceuticals
Lambert-Eaton myasthenic syndrome (LEMS) is a very aggressive, chronic, neuromuscular condition that is rare but can affect anyone. However, with diseases as rare as LEMS, the patient community tends to be underdiagnosed and mis-diagnosed. Catalyst wanted to bring reliable information and connections within the patient community to the people who needed it most. Maria Pandolfo oversaw this effort.
Maria worked with Snow Companies to launch Catalyst’s first Ambassador program for Firdapse (amifampridine), a prescription medicine for adults with Lambert-Eaton myasthenic syndrome (LEMS). Maria launched the program in 2020, starting with a group of seven branded Ambassadors. The program is currently expanding, and now Catalyst also has a cohort of disease education Ambassadors who do not talk about the brand but can raise awareness of LEMS.
Maria also launched LEMS Connection, a mentor program through which patients who have been diagnosed with LEMS can talk with other LEMS patients about their personal experiences with LEMS and/or Firdapse. She also made sure Patient Ambassadors could participate in a number of relatively unusual opportunities, such as academic fellowship programs or external podcasts. She also launched a program called “Coffee Break Events” that brings relevant content to patients and gives them the opportunity interact with one another.
Feedback from both the virtual and live Ambassador program events has been strong with 82% of surveyed attendees expressing they plan to take an action and 81% saying they plan to attend another Catalyst-sponsored event. Meanwhile, after speaking with a mentor, 54% plan to continue Firdapse as prescribed and 35% plan to talk to their HCP about treatment options.
