Patient Focus
September 6, 2023
First Consensus Recommendations for Holistic Care of People Living With Hereditary ATTR Am ...
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February 28, 2023
The Importance of Self-Advocacy: Supporting Patients and Caregivers in Their Rare Disease ...
Rare Disease Day unites the community to spread awareness and support the millions of people worldwide living with with a rare disease.
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May 9, 2022
Building a Collaborative Framework for Facilitating Patient Access to Innovative Therapies
Alnylam worked with leading European economists and other healthcare experts to develop what we call the Value-Based Negotiation Framework (VBNF) to help...
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April 2, 2022
The Making of Two of Me: Living with Porphyria
Cynthia Lowen, Emmy-nominated filmmaker, talks about the making of Two of Me: Living with Porphyria.
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February 28, 2022
Supporting Health Equity for All Through Leadership, Action and Partnership
"Health equity" means that everyone has a fair and just opportunity to live the healthiest life possible, regardless of who they are, where they live or how...
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December 21, 2021
Alnylam Publishes 2021 Patient Access Philosophy Report
Alnylam has published its 2021 Patient Access Philosophy Report detailing its actions as a company to provide access to its medicines for those who may...
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December 16, 2021
Guest Post: Creating Connections to Support the hATTR Amyloidosis Community
Susanne Berglund is the Chancellor of FAMY Norrbotten, an amyloidosis patient advocacy group reflects on the importance of making connections to support...
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September 6, 2021
Co-Creating with Patients, for Patients: Addressing Unmet Needs in Conversations about AT ...
Collaborating with patient organizations and patients is an essential part of our efforts to support people living with a complex rare disease like...
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September 4, 2021
Guest Post: Tracking My hATTR Amyloidosis Symptoms to Take Back Control
David, from the UK, is living with hereditary ATTR amyloidosis. In this article, he discusses how he's using the STAR Symptom Tracker App to track his symptoms
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April 15, 2021
Guest Post: Partnering to Make a Positive Difference for People with Kidney Disease
LaVarne Burton, President and CEO of the American Kidney Fund talks about the importance of partnerships...
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