April 9, 2020April 9, 2020
Exicure’s Program for Friedreich’s Ataxia Not Altered by COVID-19

The COVID-19 pandemic has not affected the preclinical program of XCUR-FXN, an experimental treatment for Friedreich’s ataxia (FA), Illinois-based Exicure said. Since biotechnology ... Read more
April 7, 2020April 7, 2020
NORD’s Advice on COVID-19: You’re Stronger Than You Think

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to ... Read more
April 2, 2020March 30, 2020
Journaling Helped Me Document My FA Progression

One of the harsh realities of life with Friedreich’s ataxia is falling. That was my first major symptom and a red flag. I ... Read more
April 2, 2020April 2, 2020
Reata Starting At-home Visits in MOXIe Extension Trial Due to COVID-19 Risk

To minimize risk during the COVID-19 pandemic, Reata Pharmaceuticals is implementing at-home visits to deliver omaveloxolone to Friedreich’s ataxia (FA) patients and to assess ... Read more
April 1, 2020March 30, 2020
My Family’s Legacy Is Centered on Grandma’s Cajun Food

Long before COVID-19, a little girl named Eula walked to the end of the road to catch a school bus. It was 1935, so ... Read more

News

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
March 31, 2020March 31, 2020
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 ...
News

Design Therapeutics Launches with $45M to Advance Therapy Candidates for FA and Other Disorders
March 26, 2020March 26, 2020
Design Therapeutics has launched with $45 million in funding to advance its lead candidate ...
Columns, Little Victories - a Column by Matthew Lafleur

Thank You for Your COVID-19 Response — from a Rare Disease Patient
March 25, 2020March 23, 2020
It’s finally happened: the first outbreak within my parish (or “county” for you non-Louisiana ...
Columns, No Good Excuse - a Column by Sean Baumstark

Don’t Forget About Self-care During the Pandemic
March 24, 2020March 23, 2020
There’s never a “good time” for the world to face a pandemic, or for ...
News

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
March 23, 2020March 23, 2020
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate ...
Columns, Fighting FA - a Column by Frankie Perazzola

What We Can Take Away from the Coronavirus Pandemic (So Far)
March 23, 2020March 20, 2020
In times like these, I wish I had superpowers or a magic wand to ...

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Neurofilament Proteins Show Promise as Biomarkers of Neurodegeneration in FA
March 19, 2020March 19, 2020
Neurofilament light chain (NfL) and phosphorylated neurofilament heavy chain (pNfH) — two key components ...
I Have a Complex Relationship with Physical Therapy
March 19, 2020March 18, 2020
I was an athlete until my mid-20s. I swam competitively for 14 years and ...
My Physical Therapy Progress: Mastering the Dead Man’s Crawl
March 18, 2020March 18, 2020
My Diagnosis Changed Many of My Friendships
March 16, 2020March 12, 2020
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
March 12, 2020March 12, 2020
Worsening Physical Impairments Affect Quality of Life in FA, Study Shows
March 12, 2020March 12, 2020

I Am Redefining Hope, Every Day
March 11, 2020March 9, 2020
I was giddy that day, a month or two ago. So much so that ...
Not All Decisions Should Be Rooted in Money
March 10, 2020March 9, 2020
Podcast Series Promotes FA Advocacy
March 6, 2020March 5, 2020
Exenatide Therapy Increases Key Frataxin Protein Levels, Study Finds
March 5, 2020March 5, 2020

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
March 4, 2020March 5, 2020
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media ...
Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
March 3, 2020March 3, 2020
Easier Doesn’t Always Mean Better
March 3, 2020February 28, 2020

Candy Shell Life - a Column by Lauryn Smith, Columns

Hope for a Friedreich’s Ataxia Cure Keeps Fear of the Future at Bay
March 2, 2020February 27, 2020
When my children were born, I had an irrational fear that something bad would ...
Columns, Fighting FA - a Column by Frankie Perazzola

Dealing with Mental Health Issues While Living with a Chronic Illness
March 2, 2020February 27, 2020
Mental health is a significant yet overlooked aspect of dealing with a chronic illness. ...
A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Accessible Stalls Are More Than a Convenience
February 28, 2020February 26, 2020
Living with Friedreich’s ataxia (FA) has taught me to appreciate the little things. I ...
News

HIV Therapy Etravirine Set to Enter Phase 2 FA Trial in Italy
February 27, 2020February 28, 2020
Etravirine — an approved anti-viral therapy for HIV — is expected to soon enter ...
News

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
February 27, 2020February 27, 2020
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders ...
News

New US Institute for Gene Therapies Seeks to Modernize Regulatory, Reimbursement Framework
February 27, 2020February 26, 2020
The Institute for Gene Therapies (IGT) has launched, with the aim of maximizing the ...
Columns, Little Victories - a Column by Matthew Lafleur

I Might Be Rare, but I Am Not Alone
February 26, 2020February 24, 2020
My teacher and my best friend’s mom talked amid the gaggle of parents picking ...
Columns, No Good Excuse - a Column by Sean Baumstark

Learning a Lesson in Customer Service from a Recent Airline Experience
February 25, 2020February 21, 2020
If you follow me on social media, you probably saw this column coming. In ...
Friedreich's Ataxia, News

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
February 21, 2020March 3, 2020
An abundance of events are afoot around the world to mark Rare Disease Day ...

October 5, 2017February 20, 2019

Urinary, Bowel, Sexual Symptoms in FA Lead to Lower Quality of Life, Study Reports

News

Many Friedreich’s ataxia patients experience urinary tract symptoms, bowel problems, and sexual dysfunction, which leads to a lower quality of life, research shows. The study, “Urinary, bowel and sexual symptoms in a cohort of patients with Friedreich’s ataxia,” was ... Read more

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