People living with hereditary transthyretin (hATTR) amyloidosis — which includes familial amyloid polyneuropathy (FAP) — report “profound” life changes due to their disease, particularly…
hATTR-PN
One of my greatest accomplishments in life is being a mother to four amazing individuals. I cannot give enough credit to my kids for handling…
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from…
HATTR-PN
Health InsightsFAP and Surgery
At some point in life, most people will go through some form of surgery, including those with rare diseases like familial amyloid polyneuropathy (FAP).
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient…
In focus groups, transthyretin (ATTR) amyloidosis patients and families reported challenges and concerns related to the odyssey of getting a diagnosis,…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by…
HATTR-PN
Health InsightsFAP and Exercise
Familial amyloid polyneuropathy (FAP) is a rare condition that can affect the heart, other organs, and the nervous system due to the buildup of…
HATTR-PN
NewsGDF-15 Protein May Be Early Biomarker of Heart Disease
The levels of blood GDF-15 could detect the development and progression of heart disease in people with hereditary transthyretin (ATTRv) amyloidosis, which includes familial…
HATTR-PN
ColumnsThe Importance of Maintaining Our Well-being as Caregivers
Neurologist Donn Dexter wrote an article last year for the Mayo Clinic titled “5 tips to keep your brain healthy.” I thought it…
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