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.
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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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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.
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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.
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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.
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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...
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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.
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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...
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