Updates

July 7, 2020July 7, 2020
Calprotectin Protein Could Be Non-invasive Biomarker for FAP, Study Suggests

Levels of calprotectin, a marker of inflammation, are elevated in the feces of people with familial amyloid polyneuropathy (FAP) who experience gastrointestinal (GI) symptoms, ... Read more
July 2, 2020July 2, 2020
Making the Most of Your Doctor’s Visit When You Have FAP

Managing your treatment and care when you have a rare disease such as familial amyloid polyneuropathy (FAP) can be challenging, especially if your care ... Read more
June 23, 2020June 23, 2020
FAP Treatment Tegsedi Approved for Reimbursement in Italy

The Italian Medicines Agency has added Tegsedi (inotersen), a treatment for familial amyloid polyneuropathy (FAP), to the list of reimbursed therapies in the country. ... Read more
June 22, 2020June 22, 2020
Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization ... Read more
June 18, 2020June 18, 2020
Planning for Your Future After a FAP Diagnosis

Finding out that you have a rare disease, like familial amyloid polyneuropathy (FAP), that may affect your lifespan can be challenging and frightening. It’s important to ... Read more

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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

Updates

Calprotectin Protein Could Be Non-invasive Biomarker for FAP, Study Suggests

Making the Most of Your Doctor’s Visit When You Have FAP

FAP Treatment Tegsedi Approved for Reimbursement in Italy

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Planning for Your Future After a FAP Diagnosis

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Alnylam Gives $270K to Support Projects by 5 FAP Advocacy Groups

Clinical Trials for FAP

Coalition Will Address Racial Disparities in Rare Disease Communities

Tegsedi Shows Sustained Benefits, Long-term Safety in FAP Patients

The Spoon Theory for FAP Patients

Tegsedi Approved for Reimbursement in Portugal

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Genetic Testing for FAP

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

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Support Groups for People with FAP and Why They’re Important

How to Increase Serotonin Levels Naturally

Tegsedi Available to FAP Patients in Spain at Reduced Cost

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

How Will FAP Affect My Lifespan?

I’ve Been Diagnosed with FAP. Now What?

How Neuropathy Patients Can Manage the Return of Warm Weather

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

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

How to Stay Motivated with a Chronic Disease like FAP

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Tafamidis Delays Disease Progression in Patients with Transthyretin Amyloid Polyneuropathy, Pfizer Study Suggests

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Calprotectin Protein Could Be Non-invasive Biomarker for FAP, Study Suggests

Making the Most of Your Doctor’s Visit When You Have FAP

FAP Treatment Tegsedi Approved for Reimbursement in Italy

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Planning for Your Future After a FAP Diagnosis

Subscribe to our mailing list

Alnylam Gives $270K to Support Projects by 5 FAP Advocacy Groups

Clinical Trials for FAP

Coalition Will Address Racial Disparities in Rare Disease Communities

Tegsedi Shows Sustained Benefits, Long-term Safety in FAP Patients

The Spoon Theory for FAP Patients

Tegsedi Approved for Reimbursement in Portugal

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Genetic Testing for FAP

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

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Support Groups for People with FAP and Why They’re Important

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

How to Increase Serotonin Levels Naturally

Tegsedi Available to FAP Patients in Spain at Reduced Cost

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

How Will FAP Affect My Lifespan?

I’ve Been Diagnosed with FAP. Now What?

How Neuropathy Patients Can Manage the Return of Warm Weather

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

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

How to Stay Motivated with a Chronic Disease like FAP

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Pin It on Pinterest