November 19, 2020November 17, 2020
Having Fabry While in the Army Was Like Mixing Oil and Water
Columns, Fabry: A Road Less Traveled – a Column by Jerry Walter
As a boy, I wasn’t aware Fabry disease caused the many physical issues I experienced, such as a reduced ... Read more
November 17, 2020November 17, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
News, syndicated
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how ... Read more
November 17, 2020November 17, 2020
Screen Kidney Transplant Patients for Fabry, Study Recommends
News
A genetic screening study found a higher-than-expected prevalence of undiagnosed Fabry disease in people who had kidney failure and transplant ... Read more
November 13, 2020November 13, 2020
Fabry Disease and Sleep
Health Insights
Sleep disorders are common in people with Fabry disease. Here are some explanations as to why disturbed sleep affects ... Read more
November 10, 2020November 10, 2020
Fabry Possible in People With Recurrent and Unexplained Fevers, Case Report Says
News
Physicians should consider Fabry disease when trying to determine the cause of recurrent episodes of fever in a patient that have ... Read more
November 6, 2020November 6, 2020
Tips for Managing Fatigue When You Have Fabry Disease
Health Insights
While not a classic symptom of Fabry disease, chronic fatigue is common among patients. But there are steps you ... Read more
November 5, 2020November 5, 2020
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
News, syndicated
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in ... Read more
November 3, 2020November 3, 2020
AVR-RD-01 Gene Therapy Granted Orphan Drug Status in EU
News
The European Commission has granted orphan drug designation to Avrobio’s investigational gene therapy AVR-RD-01 for the treatment of Fabry disease. ... Read more
October 30, 2020October 30, 2020
Fabry Disease and Seizures
Health Insights
Patients with Fabry disease may develop neurological symptoms, including seizures. While rare, these can be life-altering. Following is information about how ... Read more
October 28, 2020October 28, 2020
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
News, syndicated
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will ... Read more
October 27, 2020October 27, 2020
Chiesi Global Launches ‘Rethink Fabry’ Campaign With New Resources, Website
News
Chiesi Global Rare Diseases has launched a campaign called “Rethink Fabry” that seeks to help people with the rare ... Read more
October 23, 2020October 23, 2020
Fabry Disease and Anesthesia
Health Insights
People with Fabry disease may need, at some point, to undergo medical procedures that require anesthesia. Here is information ... Read more

October 27, 2020October 27, 2020

Chiesi Global Launches ‘Rethink Fabry’ Campaign With New Resources, Website

News

Chiesi Global Rare Diseases has launched a campaign called “Rethink Fabry” that seeks to help people with the rare genetic disorder, along with their caregivers and family members, to ... Read more

October 23, 2020October 23, 2020

Fabry Disease and Anesthesia

Health Insights

People with Fabry disease may need, at some point, to undergo medical procedures that require anesthesia. Here is information about the different types of anesthesia, how Fabry disease may ... Read more

October 22, 2020October 21, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

News, syndicated

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a ... Read more

October 20, 2020October 20, 2020

Protalix, Chiesi Launch Expanded Access Program for PRX-102 in the US

News

Protalix BioTherapeutics and Chiesi Global Rare Diseases have launched an expanded access program (EAP) in the U.S. for PRX-102 (pegunigalsidase alfa), an investigational enzyme replacement therapy (ERT) to treat ... Read more

October 16, 2020October 16, 2020

Fabrazyme vs. Replagal for the Treatment of Fabry Disease

Health Insights

There currently is no cure for Fabry disease, but there are treatments available to help manage the symptoms of the disease. Two, Fabrazyme and Replagal, are very similar forms of ... Read more

October 13, 2020October 13, 2020

Kidney Foundation Opens Effort to Raise Awareness of Fabry Disease

News

The American Kidney Fund (AKF) has opened a Fabry disease education and awareness campaign that encourages people with chronic kidney disease (CKD) who don’t know the underlying cause of their ... Read more

October 9, 2020October 9, 2020

Independent Living for Fabry Disease Patients

Health Insights

Having a chronic condition such as Fabry disease can be particularly concerning if you are living alone. However, there are steps you can take to help you live well and ... Read more

October 7, 2020November 2, 2020

The Challenges of Parenting With Fabry Disease

Columns, The Fabry Files - a Column by Eunice White

What is my job as a parent? In thinking this question through, I came up with a few answers, but it’s not an exhaustive list. I am to protect, ... Read more

October 6, 2020October 6, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare ... Read more

October 2, 2020October 2, 2020

Preimplantation Genetic Diagnosis (PGD) for Fabry Disease

Health Insights

If you or your partner has a family history of Fabry disease, you may want to lower your risk of passing the disease to your children by choosing in vitro ... Read more

Having Fabry While in the Army Was Like Mixing Oil and Water

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Screen Kidney Transplant Patients for Fabry, Study Recommends

Fabry Disease and Sleep

Fabry Possible in People With Recurrent and Unexplained Fevers, Case Report Says

Tips for Managing Fatigue When You Have Fabry Disease

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

AVR-RD-01 Gene Therapy Granted Orphan Drug Status in EU

Fabry Disease and Seizures

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Chiesi Global Launches ‘Rethink Fabry’ Campaign With New Resources, Website

Fabry Disease and Anesthesia