hATTR amyloidosis

October 24, 2022 “Be the Link!” Learn from patients on World Amyloidosis Day No one knows this better than Jean-Christophe Fidalgo, President of the Amyloidosis Alliance, who has been living with hATTR amyloidosis for more than 20 years. 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 ›
February 25, 2020 Advocacy for Impact Grants: Updates from the Field Learn about how patient organizations who received 2018-2019 Alnylam Advocacy for Impact Grants have been putting those funds to work. Read More ›
January 9, 2020 Expressing the Puzzling Challenges of hATTR Amyloidosis Through Art We recently spoke with Peggy and her life partner Dan, who is living with hATTR amyloidosis, about their submission, At the Coffee Shop.  Read More ›
December 4, 2019 Guest Post: Partnering to Educate the African American Community About hATTR Amyloidosis One of our areas of focus at Black Health Matters is education about the importance of knowing one’s family health history. Read More ›
August 8, 2019 Call for Entries: Deadline Extended - Submit Your Original Art Depicting Life with hATTR A ... “The Art of Living with hATTR Amyloidosis” is a new initiative inviting members of the hereditary ATTR (hATTR) amyloidosis community – including patients... Read More ›
June 19, 2018 Guest Post: Finding Hope in a Potential New Class of Medicines Amyloidosis first entered my husband’s life and my life in the mid-1990s, when we began to care for my uncle who had amyloidosis, a time I call the “dark ages. Read More ›
July 1, 2017 One Family, Three Generations, One Disease - Living with hATTR Amyloidosis Multiple generations of a family have been impacted by hereditary ATTR (hATTR) amyloidosis. In this video, Ron Sr., his sons Don and Ron Jr., his... Read More ›

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