Patient Focus

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 hereditary A 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 ›
March 12, 2021 Decades of Pain and Uncertainty: Donna’s AHP Story For more than 20 years, Donna navigated debilitating pain, mysterious symptoms and uncertainty about her health. Today, with a better handle on her wellbeing Read More ›
March 2, 2021 When Are Kidney Stones a Red Flag? According to some estimates, every 1 in 10 adults in the U.S. experiences a kidney stone, suggesting that kidney stones can be rather prevalent. But when are st Read More ›
February 23, 2021 Rare Disease Day 2021: Rare Is Many. Rare Is Strong. Rare Is Proud. While some aspects of living with a rare disease are similar, there is no singular shared experience. There is, however, a common sentiment among those impacted Read More ›
December 7, 2020 Alnylam Releases 2nd Annual Patient Access Philosophy Report The 2020 Alnylam Patient Access Philosophy Report details Alnylam's progress against key metrics related to patient access to its innovative RNAi therapeutics. Read More ›
September 14, 2020 Navigating AHP and Pain During a Pandemic As the COVID-19 pandemic continues to have a significant impact on people and communities around the world, it poses unique challenges for people living with AH Read More ›
August 3, 2020 How to Evaluate a Medicine for the Treatment of an Ultra-rare Disease Such as PH1 For a new medicine to become available, it needs to undergo stringent testing in clinical trials to evaluate its safety and, importantly, its efficacy (how well Read More ›
June 2, 2020 Announcing the 2019-2020 Advocacy for Impact Grant Recipients The Alnylam 2019-2020 Advocacy for Impact grant recipients come from five countries across three continents, and will receive grants totaling USD $270,000.00... Read More ›

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