Updates

August 4, 2020August 4, 2020
Tegsedi Eases Disease Progression in FAP Patients, Trial Data Show

Treatment with Tegsedi (inotersen) slows neurological disease progression in people with familial amyloid polyneuropathy (FAP), results from a Phase 2/3 clinical trial show. The ... Read more
July 30, 2020
FAP and Your Eyes

Familial amyloid polyneuropathy (FAP) is a disorder in which abnormal clumps of proteins called TTR amyloids accumulate in tissues and organs, interfering with their ... Read more
July 23, 2020July 23, 2020
Keeping a Food Diary When You Have FAP

If you have familial amyloid polyneuropathy (FAP), a healthy diet may help delay the onset and slow the progression of the disease. To keep ... Read more
July 21, 2020July 21, 2020
Long-term Onpattro Use Safely Halts FAP Progression, Phase 2 Data Show

Long-term treatment with Onpattro (patisiran) safely and effectively halts or reverses disease progression in people with familial amyloid polyneuropathy (FAP), final data from a ... Read more
July 16, 2020July 23, 2020
FAP and Diet

Environmental factors such as diet may help delay the onset and slow the progression of familial amyloid polyneuropathy (FAP). Following are some dietary suggestions you ... 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

Tegsedi Eases Disease Progression in FAP Patients, Trial Data Show

FAP and Your Eyes

Keeping a Food Diary When You Have FAP

Long-term Onpattro Use Safely Halts FAP Progression, Phase 2 Data Show

FAP and Diet

Subscribe to our mailing list

New Nerve Imaging Tool May Aid Early FAP Diagnosis, Study Suggests

Mindfulness for FAP Patients

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

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?

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

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Tegsedi Eases Disease Progression in FAP Patients, Trial Data Show

FAP and Your Eyes

Keeping a Food Diary When You Have FAP

Long-term Onpattro Use Safely Halts FAP Progression, Phase 2 Data Show

FAP and Diet

Subscribe to our mailing list

New Nerve Imaging Tool May Aid Early FAP Diagnosis, Study Suggests

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Mindfulness for FAP Patients

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

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?

Pin It on Pinterest