Updates

February 19, 2020February 18, 2020
Ways to Approach Driving with Peripheral Neuropathy

The numbness and tingling sensations associated with peripheral neuropathy may significantly impact a patient’s everyday life. Tasks such as cooking, cleaning, grocery shopping, and ... Read more
February 18, 2020February 18, 2020
FAP V122I Mutation Associated with Heart Failure in African, Hispanic People, Study Finds

The V122I gene mutation, found primarily in people of African descent with hereditary transthyretin amyloidosis (ATTR), is associated with heart failure in individuals of ... Read more
February 12, 2020February 11, 2020
Tips to Reduce Peripheral Neuropathy Pain and Improve Sleep Quality

Pain from peripheral neuropathy can become severe enough to disrupt sleep patterns and cause poor sleep quality for patients. Those with familial amyloid polyneuropathy ... Read more
February 11, 2020February 11, 2020
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar

The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. ... Read more
February 11, 2020February 11, 2020
Nuclear Medicine Imaging Can be Used to Distinguish Amyloidosis Subtypes, Study Says

A nuclear imaging technique called 99mTc-DPD scintigraphy can be used to distinguish different subtypes of amyloidosis, including familial amyloid polyneuropathy (FAP), according to a ... Read more

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News

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus
February 5, 2020February 5, 2020
The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan ...
Columns, Rumination and Response - a Column by Ezekiel Lim

How Stress May Worsen Peripheral Neuropathy Pain
February 5, 2020February 3, 2020
Stress is a difficult part of everyday life. Whether it’s work-related, health-related, or the ...
News

Cathepsin E Implicated in Immune Dysfunction in FAP, May Be Biomarker, Mouse Study Suggests
February 4, 2020February 4, 2020
The protein cathepsin E — known for regulating immune system cells — may be ...
Columns, Rumination and Response - a Column by Ezekiel Lim

What Neuropathy Patients Should Know About IVIG
January 29, 2020January 28, 2020
Familial amyloid polyneuropathy patients and their caregivers will want to research treatment options at ...
News

Review Details Recommendations to Improve FAP Diagnosis
January 28, 2020January 28, 2020
Diagnosing hereditary amyloid transthyretin (ATTRv) amyloidosis with polyneuropathy, also called familial amyloid polyneuropathy (FAP), ...
Columns, Rumination and Response - a Column by Ezekiel Lim

The Right Diet Can Help Neuropathy Patients Better Manage Symptoms
January 22, 2020January 21, 2020
For patients with familial amyloid polyneuropathy, the pain, tingling, and numbness associated with peripheral ...

Eye Disease Common in FAP Patients with Ser77Tyr Mutation, May Serve as Biomarker, Research Suggests
January 21, 2020January 21, 2020
People with a type of FAP caused by a Ser77Tyr mutation are more likely ...
Neuropathy and Hiking: A Patient’s Guide to the Outdoors
January 15, 2020January 14, 2020
Patients actively or recently experiencing symptoms of peripheral neuropathy may find previously existing patterns ...
PTC Announces Tegsedi’s Launch Into Brazilian Market as Treatment for FAP
January 14, 2020January 15, 2020
Helping Neuropathy Patients Cope with Loneliness
January 8, 2020January 6, 2020
FAP Annual Costs and Burden Are Considerable, But in Line with Other Rare Diseases
January 7, 2020January 7, 2020
5 Last-minute Christmas Gifts for Neuropathy Patients
December 18, 2019December 16, 2019

Early Diagnosis of Eye Manifestations Essential in FAP Patients, Review Says
December 17, 2019December 17, 2019
Although uncommon, eye manifestations can affect patients with familial amyloid polyneuropathy (FAP). These are ...
Choosing Style and Comfort: 5 Footwear Brands for Neuropathy Patients
December 11, 2019December 9, 2019
Diuretics to Treat Blood Pressure May Stop Proteins from Clumping, Early Study Suggests
December 10, 2019December 10, 2019
HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 6, 2019December 6, 2019

Alnylam Opens ‘Advocacy for Impact’ Grant Program Supporting FAP, Like Patient Groups
December 3, 2019December 3, 2019
Alnylam Pharmaceuticals has opened its second annual competitive grants program, supporting patient advocacy projects worldwide ...
How to Manage Neuropathy Symptoms During Thanksgiving
November 27, 2019November 25, 2019
Akcea and Ionis Launch Phase 3 Trial of AKCEA-TTR-LRx in People With FAP
November 26, 2019November 26, 2019

News

Gait Tracking Using RGB-D Camera Could Aid Doctors in Diagnosing, Managing FAP, Study Shows
November 19, 2019November 19, 2019
An affordable, portable, and non-invasive human motion tracking system based on an RGB-D camera ...
News

Rare Disease Film Festival Highlights Patient and Researcher Unity
November 15, 2019November 16, 2019
Rare disease-themed videos glowed on a large screen before an audience of people in ...
Columns, Rumination and Response - a Column by Ezekiel Lim

Therapy Dogs Offer Benefits for Neuropathy Patients
November 13, 2019November 11, 2019
Pets can provide companionship and help with basic tasks to neuropathy patients and their ...
News

Protein Modification May Lead to Heart Problems in FAP by Promoting Aggregation of Mutant TTR, Study Says
November 12, 2019November 12, 2019
The addition of the amino acid homocysteine to the mutated transthyretin (TTR) protein found ...
Columns, Rumination and Response - a Column by Ezekiel Lim

Starting an Exercise Routine While Managing Peripheral Neuropathy Symptoms
November 6, 2019November 4, 2019
For people who have peripheral neuropathy symptoms associated with familial amyloid polyneuropathy, self-care may ...
News

Study Describes Characteristics of Autonomic Symptoms in Hereditary Amyloidosis
November 5, 2019November 5, 2019
Autonomic symptoms are common among patients with hereditary ATTR amyloidosis, usually accompany the progression ...

September 6, 2017September 6, 2017

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

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