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Looking Beyond the Clinic: Putting Patients at the Center of Holistic Care in Transthyretin-Mediated (ATTR) Amyloidosis
October 24, 2025
“Closing gaps in care for people with transthyretin-mediated (ATTR) amyloidosis starts with listening to patients and families about what truly matters in their care journey.”
These words - shared by Christine Chiti, clinical TTR nurse specialist at the Royal Free Hospital, UK, during the International ATTR 2025 Meeting for Patients and Doctors in Baveno, Italy - capture the spirit behind World Amyloidosis Day 2025. The day brings together members of the ATTR community to raise awareness, share experiences and drive action for change.
Enhancing understanding of this life-threatening disease and ensuring that care reflects the realities of those living with it are vital goals shared across the community. In recognition of World Amyloidosis Day, Alnylam is proud to stand alongside patients, clinicians, researchers and advocates working to strengthen awareness, education and support for holistic, person-centered care in ATTR.
ATTR is a complex, multi-system condition that can affect multiple parts of the body, including the nerves, heart and other organs. Fatigue, pain, mobility limitations and emotional strain all influence how a person experiences their illness. Because the disease impacts multiple systems, diagnosis can take years and often requires input from several specialists before connections are made. Even after diagnosis, care can be fragmented and isolating, with patients navigating between various medical disciplines to manage their condition.
For people living with ATTR, care must extend beyond symptom management, encompassing physical, mental, and emotional health to ensure a holistic approach to well-being and quality of life.” - Dr. Caroline Morbach, Cardiologist, University Hospital Würzburg, Germany
L to R: Dr. Caroline Morbach, Sean and Dr. Beata MajNo one understands these realities better than the people at the center of them. One of those people is Sean, who lives with ATTR with cardiomyopathy (ATTR-CM). After a long journey to diagnosis, Sean began treatment and has since focused on raising awareness, supporting others in the community and finding strength through connection and creativity.
Living with ATTR has taught me that it’s about more than managing symptoms. It's about care that embraces every aspect of my well-being, recognizing that a full life involves more than just treatment. Staying connected, finding purpose and supporting each other truly make a difference.” - Sean, living with ATTR-CM
Sean’s story is one of many that highlights the need for more holistic, person-centered care both inside and outside the clinical setting. That is why Alnylam is working closely with a multidisciplinary group comprising cardiologists, specialist nurses, patient advocates, patients and primary care specialists to develop a series of recommendations aimed at strengthening coordination, improving understanding of patient needs and supporting a more connected approach to care.
We often hear from individuals living with ATTR who feel their care is fragmented. Our goal is to help connect the pieces across disciplines and ensure comprehensive care that supports patients' physical, emotional, social, and spiritual needs, both inside and outside the clinical setting. We want patients, caregivers and their families to feel seen and supported. Working hand in hand with the ATTR community is essential to driving meaningful change, and we look forward to continuing this collaboration to advance truly patient-centered care.” - Beata Maj, M.D., VP, Head of Medical Affairs, International TTR, Alnylam
