Patient Focus

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. Read More ›
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... Read More ›
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. Read More ›
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... Read More ›
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... Read More ›
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... Read More ›
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... Read More ›
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 Read More ›
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... Read More ›

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