Updates

January 22, 2020January 21, 2020
The Right Diet Can Help Neuropathy Patients Better Manage Symptoms

For patients with familial amyloid polyneuropathy, the pain, tingling, and numbness associated with peripheral neuropathy symptoms may be exacerbated by what they eat. Patients ... Read more
January 21, 2020January 21, 2020
Eye Disease Common in FAP Patients with Ser77Tyr Mutation, May Serve as Biomarker, Research Suggests

People with a type of FAP caused by a Ser77Tyr mutation are more likely to develop conjunctival lymphangiectasia, an uncommon clinical condition characterized by ... Read more
January 15, 2020January 14, 2020
Neuropathy and Hiking: A Patient’s Guide to the Outdoors

Patients actively or recently experiencing symptoms of peripheral neuropathy may find previously existing patterns of life and activity to be disrupted by the onset ... Read more
January 14, 2020January 15, 2020
PTC Announces Tegsedi’s Launch Into Brazilian Market as Treatment for FAP

Tegsedi (inotersen) has been approved in Brazil to treat stage 1 or 2 nerve damage (polyneuropathy) in adults with hereditary transthyretin amyloidosis (hATTR), also known ... Read more
January 8, 2020January 6, 2020
Helping Neuropathy Patients Cope with Loneliness

While patients with familial amyloid polyneuropathy are struggling with the pain of peripheral neuropathy, they may also be battling loneliness. A sense of isolation ... Read more

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News

FAP Annual Costs and Burden Are Considerable, But in Line with Other Rare Diseases
January 7, 2020January 7, 2020
The annual costs and disease burden associated with hereditary transthyretin amyloidosis polyneuropathy (ATTRv-PN), also ...
Columns, Rumination and Response - a Column by Ezekiel Lim

5 Last-minute Christmas Gifts for Neuropathy Patients
December 18, 2019December 16, 2019
With the holiday season upon us, friends and family members of neuropathy patients may ...
News

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 ...
Columns, Rumination and Response - a Column by Ezekiel Lim

Choosing Style and Comfort: 5 Footwear Brands for Neuropathy Patients
December 11, 2019December 9, 2019
Patients with peripheral neuropathy symptoms must take care to reduce discomfort in their feet. ...
News

Diuretics to Treat Blood Pressure May Stop Proteins from Clumping, Early Study Suggests
December 10, 2019December 10, 2019
Two FDA-approved treatments for high blood pressure, diuretics called indapamide and hydrochlorothiazide, might also ...
News

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 6, 2019December 6, 2019
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or ...

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
Thanksgiving is a time for friends and family to spend together reflecting on the ...
Akcea and Ionis Launch Phase 3 Trial of AKCEA-TTR-LRx in People With FAP
November 26, 2019November 26, 2019
Gait Tracking Using RGB-D Camera Could Aid Doctors in Diagnosing, Managing FAP, Study Shows
November 19, 2019November 19, 2019
Rare Disease Film Festival Highlights Patient and Researcher Unity
November 15, 2019November 16, 2019
Therapy Dogs Offer Benefits for Neuropathy Patients
November 13, 2019November 11, 2019

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 ...
Starting an Exercise Routine While Managing Peripheral Neuropathy Symptoms
November 6, 2019November 4, 2019
Study Describes Characteristics of Autonomic Symptoms in Hereditary Amyloidosis
November 5, 2019November 5, 2019
What Patients Should Know About CBD for Peripheral Neuropathy
October 30, 2019October 28, 2019

Early Childhood Onset of FAP Described in Korean Teenager
October 30, 2019October 30, 2019
The case of a 17-year-old boy who experienced the first symptoms of familial amyloid ...
Vyndaqel Likely to Treat FAP Linked to Mutation Common in Asians, Lab Study Suggests
October 23, 2019October 23, 2019
Gastroenterologists Should Be Part of Multidisciplinary Team to Treat FAP, Study Suggests
October 18, 2019October 18, 2019

Columns, Rumination and Response - a Column by Ezekiel Lim

How Caregivers and Patients Can Manage Bodily Responses to Stress
October 16, 2019October 14, 2019
Anxiety is a common response to an increasingly demanding society and work culture. We ...
Columns, Rumination and Response - a Column by Ezekiel Lim

How to Manage Neuropathy Symptoms While Traveling
October 9, 2019October 7, 2019
For caregivers of patients with familial amyloid polyneuropathy, a great deal of planning is ...
News

Noninvasive Imaging Techniques May Help Identify, Monitor Eye Problems in FAP, Study Shows
October 8, 2019October 8, 2019
Noninvasive imaging techniques may be helpful for identifying and monitoring eye problems in familial ...
Columns, Rumination and Response - a Column by Ezekiel Lim

How to Manage Peripheral Neuropathy Pain When Interacting with Children
October 2, 2019September 30, 2019
For patients with familial amyloid polyneuropathy, even time spent with family can be physically ...
News

Study Supports Genetic Testing for FAP in Neuropathy with No Known Cause
October 1, 2019October 1, 2019
Genetic sequencing can help to diagnose familial amyloid polyneruopathy (FAP) in people diagnosed with ...
News

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
September 27, 2019September 27, 2019
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, ...

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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