February 18, 2021February 19, 2021
74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

Over about two weeks, more than 74,000 people worldwide have signed a petition from the Friedreich’s Ataxia Research Alliance (FARA) requesting that omaveloxolone (omav) be made available ... Read more
February 26, 2021February 25, 2021
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a ... Read more
February 25, 2021February 22, 2021
The Battle Between Taking Care of Myself and Letting FA Ruin My Life

The most unexpectedly disruptive symptom of my Friedreich’s ataxia (FA) has been fatigue. When I was diagnosed with FA in 2013, my initial research focused ... Read more
February 25, 2021February 25, 2021
Neuro Key ‘Open Door’ Booklet Gives Voice to FA Patient, Caregiver Stories

Real-life stories from people affected by Friedreich’s ataxia (FA) — featured in a new educational resource —capture the challenges of living with a complex and largely ... Read more
February 24, 2021February 22, 2021
A Rare Disease Day Reflection: We Aren’t Just Inspirational Tiny Tims

Living with a rare disease isn’t as simple as I thought it would be. I’ve been thinking about this lately, because on Feb. 28, the ... Read more
February 23, 2021February 23, 2021
Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research ... Read more

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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 published in ... Read more

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

The Battle Between Taking Care of Myself and Letting FA Ruin My Life

Neuro Key ‘Open Door’ Booklet Gives Voice to FA Patient, Caregiver Stories

A Rare Disease Day Reflection: We Aren’t Just Inspirational Tiny Tims

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

In the Darkest Moments, I Find Glimmers of Hope

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

On Good Days, I Fear the Sleeping Friedreich’s Ataxia Giant

Rare Disease Day Momentum Comes From Decades of Advocacy

It Takes a Village to Live With Friedreich’s Ataxia

Subscribe to our mailing list

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

Leriglitazone Shows Benefits in Cell and Animal Models

Pandemic Won’t Stop Rare Disease Day on Feb. 28

How I Respond to Pity as a Friedreich’s Ataxia Patient

Startup Lexeo Raises $85M to Pursue 3 New Gene Therapies

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

I’m Learning to Set Measurable Goals and Plan for the Future

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

How I Protect My Blindside From Friedreich’s Ataxia

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

The Beauty of Being Alone, and Why It’s Not for Me Anymore

Why I Choose to Adapt to the Ongoing Challenges of a Progressive Disease

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

How I Get Through Bad Days With Friedreich’s Ataxia

FXN Gene Therapy Treats Heart Problems in New FA Mouse Model

Crawling Toward Fitness as My Abilities Change

The FA Community Needs Your Help to Advance a Potential Treatment

First In-human Trial of XCUR-FXN Planned for 2022

Remembering Keith Andrus, Who Left His Mark on the FA Community

Finding a Silver Lining in the Wake of 2020 and the Pandemic

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

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

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

The Battle Between Taking Care of Myself and Letting FA Ruin My Life

Neuro Key ‘Open Door’ Booklet Gives Voice to FA Patient, Caregiver Stories

A Rare Disease Day Reflection: We Aren’t Just Inspirational Tiny Tims

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

In the Darkest Moments, I Find Glimmers of Hope

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

On Good Days, I Fear the Sleeping Friedreich’s Ataxia Giant

Rare Disease Day Momentum Comes From Decades of Advocacy

It Takes a Village to Live With Friedreich’s Ataxia

Subscribe to our mailing list

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

Leriglitazone Shows Benefits in Cell and Animal Models

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Let’s Reconsider How We Address Our Internalized Ableism

How I Respond to Pity as a Friedreich’s Ataxia Patient

Startup Lexeo Raises $85M to Pursue 3 New Gene Therapies

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

I’m Learning to Set Measurable Goals and Plan for the Future

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

How I Protect My Blindside From Friedreich’s Ataxia

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

The Beauty of Being Alone, and Why It’s Not for Me Anymore

Why I Choose to Adapt to the Ongoing Challenges of a Progressive Disease

74,000 Sign FARA Petition Asking FDA, Reata to Move Ahead on Omav

How I Get Through Bad Days With Friedreich’s Ataxia

FXN Gene Therapy Treats Heart Problems in New FA Mouse Model

Crawling Toward Fitness as My Abilities Change

The FA Community Needs Your Help to Advance a Potential Treatment

First In-human Trial of XCUR-FXN Planned for 2022

Remembering Keith Andrus, Who Left His Mark on the FA Community

Finding a Silver Lining in the Wake of 2020 and the Pandemic

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum