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Better Together: Collaborating for Rare Disease Care, Pharmacy Innovation Network
October 3, 2024
Sheri Trutwin
VP of Strategic Accounts, Alnylam Pharmaceuticals
Patients with rare diseases face immense challenges in accessing specialized care and treatments. At Alnylam Pharmaceuticals, our goal is not only to develop life-changing therapies but to ensure these therapies reach patients. One critical way to address this goal is through strategic collaborations such as the Pharmacy Innovation Network (PIN), which we proudly power to advance care for patients with rare conditions.
Alnylam’s Role in the Pharmacy Innovation Network (PIN)
At Alnylam, we are committed to developing more than just treatments. Our pioneering work in RNA interference (RNAi) therapeutics, such as AMVUTTRA® (vutrisiran) for the polyneuropathy of hereditary ATTR amyloidosis, treats a disease with high unmet need. However, ensuring that health systems can effectively deliver these therapies is just as crucial. This is why we’ve partnered with PIN—a learning network that empowers pharmacists by equipping them with cutting-edge knowledge and best practices for rare disease management.
“Our participation in the PIN has allowed us to collaborate with an industry partner and other health systems to accelerate pharmacy innovation and best practices, ultimately improving outcomes for patients with rare disease,” said Kyle Skiermont, PharmD, Senior Vice President of Operations, Nebraska Medicine.
Advocacy Organizations: Empowering the Patient Voice
Advocacy organizations play a key role in PIN’s success by integrating the patient’s perspective into healthcare solutions. These groups ensure that the voices of patients with rare diseases are heard, influencing how pharmacists and healthcare providers approach treatment.
At Alnylam, we closely collaborate with advocacy groups to ensure that the therapies we develop truly address patient needs. By working alongside these organizations within PIN, we are not only improving access to important treatments but also aligning our efforts with the lived experiences of patients.
“Pharmacists often have access to information that can guide the direction of patient care, whereas patient organizations like the Amyloidosis Research Consortium have high quality patient focused resources that assist health systems in identifying and supporting patients. By partnering together, we’re able to identify and bridge gaps within process and within systems, better meeting the needs of patients,” said Kristen Hsu, Executive Director of Research, Amyloidosis Research Consortium.
Currently, PIN members are working within their health systems to leverage EHR functionality to develop processes to better identify patients with suspected hATTR amyloidosis with the goal of accelerating time to diagnosis and improving operational care pathways. Opportunities to collate findings and disseminate best practices to the larger community are expected in 2025.
By supporting a network that empowers pharmacists, amplifying patient voices, and fostering strategic collaboration, Alnylam is helping to reshape how patients with rare diseases might navigate their treatment journey. This partnership reflects our belief that groundbreaking treatments must be matched with the right support systems to ensure patients receive the highest quality care.
As exemplified through the PIN collaboration, we remain committed to advancing the future of rare disease treatment through innovation, education, and collaboration—working toward a world where patients with rare diseases receive the care they need and when they need it most.
About the Author:
Sheri Trutwin is the Vice President of Strategic Accounts at Alnylam Pharmaceuticals. She leads an organization that identifies partnerships focusing on optimizing care delivery resulting in improved patient access and outcomes.
