FAP News Today

May 26, 2020May 26, 2020

Onpattro Treatment Improves Quality of Life in FAP Patients, Study Shows

FAP News Today

Treatment with Onpattro (patisiran) improves multiple aspects of quality of life in people with familial amyloid polyneuropathy (FAP), findings from a Phase 3 clinical trial show. The rapid deterioration seen ... Read more

May 19, 2020May 20, 2020

Tegsedi Available to FAP Patients in Spain at Reduced Cost

FAP News Today

Spain’s Ministry of Health has added Tegsedi (inotersen), an injection  treatment for stage 1 or 2 polyneuropathy in adults with familial amyloid polyneuropathy (FAP), to the national list of prescription medicines that ... Read more

May 6, 2020May 6, 2020

How Neuropathy Patients Can Manage the Return of Warm Weather

FAP News Today

May 2020 has arrived, introducing warmer temperatures and beautiful days — the spring season, a great time to be outside. When it’s not raining, warmer temperatures and sunlight may increase ... Read more

May 5, 2020May 5, 2020

‘Gel’ Eye Surgery in FAP Helps, But Usually Requires Follow-up Procedures, Study Finds

FAP News Today

A type of surgery that involves removal of the eye’s “gel” can improve vision in people with familial amyloid polyneuropathy (FAP), a new study suggests. However, subsequent surgeries often are ... Read more

April 30, 2020April 30, 2020

How to Stay Motivated with a Chronic Disease like FAP

FAP News Today

Because the first symptoms of familial amyloid polyneuropathy (FAP) usually appear after a person is well into adulthood, its diagnosis can be quite a shock. Then, there’s the progressive nature of ... Read more

April 22, 2020April 22, 2020

How Neuropathy Patients Can Socialize During Self-quarantine

FAP News Today

Staying positive and maintaining mental health may be challenging during self-quarantine. For neuropathy patients, whether they have diabetic neuropathy, familial amyloid polyneuropathy, or chronic inflammatory demyelinating polyneuropathy, it may be ... Read more

April 21, 2020April 21, 2020

FDA Places Vutrisiran on Fast Track as Potential FAP Treatment for Adults

FAP News Today

The U.S. Food and Drug Administration (FDA) has granted fast track designation to Alnylam Pharmaceuticals’ vutrisiran as a potential treatment of adults with familial amyloid polyneuropathy (FAP). Fast track is intended to accelerate ... Read more

April 16, 2020April 16, 2020

Why Is Genetic Counseling Important for FAP Patients?

FAP News Today

If  you or a family member are diagnosed with familial amyloid polyneuropathy (FAP), a rare progressive disease that affects nerves and other tissues, you should talk to your doctor about ... Read more

April 14, 2020April 14, 2020

Sudoscan Test of Sweat Gland Function May Improve FAP Diagnosis, Study Says

FAP News Today

Sudoscan, a device that evaluates sweat gland function, may help physicians improve the diagnosis of familial amyloid polyneuropathy — distinguishing these patients from those with chronic inflammatory demyelinating polyneuropathy, a ... Read more

April 9, 2020April 9, 2020

Someone in My Family Has FAP; Should I Also Be Tested?

FAP News Today

You may have a family history of familial amyloid polyneuropathy (FAP) and be wondering if you might also have the disease. To make an informed choice about getting tested, it ... Read more

April 8, 2020April 8, 2020

Vitamins that May Help to Treat Neuropathy Symptoms

FAP News Today

Patients with peripheral neuropathy symptoms must practice caution when managing underlying symptoms by conferring with their doctors. One nerve damage treatment strategy to discuss with a doctor is vitamin supplementation ... Read more

April 7, 2020April 7, 2020

Blood NfL Levels Seen as Sensitive Marker of FAP and Its Progression

FAP News Today

Levels of neurofilament light chain (NfL) — a proposed biomarker of several neurological disorders — are significantly higher in people with familial amyloid polyneuropathy (FAP) who show symptoms, compared to those ... Read more

April 2, 2020May 10, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

COVID-19 News, FAP News Today

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. ... Read more

April 2, 2020May 8, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

COVID-19 News, FAP News Today

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. ... Read more

March 31, 2020May 15, 2020

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

COVID-19 News, FAP News Today

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The ... Read more