Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening…
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HATTR-PN
Health InsightsFAP and Anesthesia
People with familial amyloid polyneuropathy (FAP) are likely to undergo procedures that require some form of anesthesia, which can carry extra risks for these…
Investigating how plasma from people with transthyretin (ATTR) amyloidosis affects heart cells from rats may help researchers predict future heart-related health events and deaths in…
HATTR-PN
ColumnsThe Importance of Giving a Voice to Patients and Carers
A few days ago, I had the honor of presenting at this year’s Patients as Partners Europe virtual conference, an industry forum centered on…
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that…
HATTR-PN
FAQs About FAP
Familial amyloid polyneuropathy (FAP) is an inherited, progressive disorder that can lead to multiple health issues affecting your everyday life. Here are some frequently…
People with hereditary transthyretin (ATTRv) amyloidosis, which includes familial amyloid polyneuropathy, experience multiple medical issues prior to diagnosis, with potential ATTRv markers commonly appearing…
HATTR-PN
ColumnsStaying the Course Despite the Trials We Face as Caregivers
Earlier today, I had the privilege of listening to a fellow carer share the mental, emotional, and physical trials she experienced while supporting…
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to…
HATTR-PN
Health InsightsRespite Care for FAP
Providing constant care to someone who has a chronic disease such as familial amyloid polyneuropathy (FAP) can sap you physically, mentally, and spiritually. At times,…
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