Here’s How Caregivers Can Adapt to the Acceptance Stage of Grief
The diagnosis of a rare disease in a loved one is enough to usher a new caregiver through a cognitive process caused by an ... Read more
Updates
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#AANAM – Tegsedi Continues to Benefit FAP Patients for up to Two Years
Tegsedi (inotersen) continues to slow progression of familial amyloid polyneuropathy (FAP) and maintains the same safety profile over two years of treatment, results of ... Read more -
New Caregivers Should Be Proactive When Dealing with Depression Risk
For new caregivers, depression is a clear and present danger. As the fourth of the five stages of grief, first described by psychiatrist Elisabeth ... Read more -
Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose ... Read more
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Addressing Feelings of Caregiver Anger
Familial amyloid polyneuropathy is a disease with an onset that appears randomly. With a ... -
Rare Case of Spinal Canal Narrowing Due to Amyloid Buildup Reported in FAP Patient
Narrowing of the spinal canal due to a buildup of proteins — transthyretin (TTR) ... -
How New Caregivers Must Address Feelings of Denial
The diagnosis of a disease like familial amyloid polyneuropathy in a loved one has a ... -
Vyndaqel Safe But Generally Ineffective at Delaying FAP Neuropathy in Long Term, Study Suggests
Long-term treatment with Vyndaqel (tafamidis) is safe and well-tolerated by patients with transthyretin familial ... -
Navigating the Turbulent Feelings of Caregiving
The onset of familial amyloid polyneuropathy forces daunting shifts in the relationships between caregivers and ...
Tafamidis Delays Disease Progression in Patients with Transthyretin Amyloid Polyneuropathy, Pfizer Study Suggests
News
An interim analysis of the Phase 3 trial for tafamidis (Fx-1006A) as a therapy for patients with hereditary transthyretin amyloid polyneuropathy (TTR-FAP) shows the investigational treatment delays disease progression, Pfizer announced. The study, “Long-term safety and efficacy of tafamidis for ... Read more