Study Details Autonomic Symptoms of Hereditary ATTR Amyloidosis
FAP News Today, November 2019 – In Clinical Autonomic Research, researchers reviewed the natural history of autonomic involvement in hereditary ATTR amyloidosis. The authors selected 10 reviews, 10 clinical trials extension studies and 8 clinical cases or series in different patient populations to help characterize the autonomic dysfunctions of people with hereditary ATTR amyloidosis. The analysis showed that autonomic symptoms were present in 50 percent to 80 percent of the patients.
ARC Developing a Disease-Specific PRO Tool for Patients with ATTR Amyloidosis
Amyloidosis Research Consortium, November 2019 – ARC is developing a patient-reported outcome (PRO) measurement tool to gauge how ATTR amyloidosis impacts patients and their daily lives. Read more to learn about the project and how your patients can participate.
Analysis Highlights How Rare Diseases Have Broader Fiscal Impact Than Health Costs
AJMC, October 2019 –In Orphanet Journal of Rare Diseases, researchers analyzed the impact of hereditary ATTR amyloidosis morbidity and mortality on government costs in the Netherlands. The authors found that hereditary ATTR amyloidosis patients in the Netherlands paid fewer taxes but received more from the government in the form of pensions, disability payments and healthcare. The assessment highlighted that delaying disease progression can be fiscally beneficial to governments when considering future taxes and lower disability payments.
Patients Warned Only a Doctor Should Order Genetic Testing
CBS News, September 2019 – The U.S. government is warning patients eligible for Medicare that “only a doctor you know and trust should order and approve any requests for genetic testing” after a potential scam has come to light in which marketers are selling seniors DNA tests to access Medicare benefits.
The Importance of Genetic Counseling
STAT, August 2019 – Genetic testing is all the rage at the moment, but as Dorothy discovered, the tests can contain potentially devastating information about a person’s health. After she learned she had the BRCA 1 gene mutation through a 23andMe report, she now believes it is critical to have a support system, such as a doctor or nurse, to help walk you through the genetic testing journey.
Man’s Rare Genetic Disease Traced Back to Three Centuries of County Donegal Ancestry
Irish Central, August 2019 – Family history plays a large part in understanding a patient’s history. Greg discovered just how large a role it plays when he received a confirmatory diagnosis of hereditary ATTR amyloidosis. Greg then traced his family lineage back centuries to find that more than 600 family members may have also been impacted by the disease.
Twenty-Seven Family Members Tested in One Day Thanks to Young Caregiver Inspired by New Treatment
FAP News Today, August 2019 – Growing up with family members living with hereditary ATTR amyloidosis, Angel decided to see if she carried the genetic mutation associated with the disease, and she didn’t just stop there. With the help of Dr. Sarni Khella, chief of the Department of Neurology at Penn Presbyterian Medical Center at the University of Pennsylvania, she organized a genetic testing day, through the hATTR Compass Program, with 27 of her family members.