May 14, 2020May 12, 2020

Pros and Cons of Mothering with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I am the proud mother to two children: my 5-year-old son and my nearly 3-year-old daughter. We just celebrated Mother’s Day last weekend. My family always does a wonderful ... Read more

May 14, 2020May 14, 2020

FARA Presenting Research Flash Talk Series During FA Awareness Month

News

To mark Friedreich’s Ataxia Awareness Month, the Friedreich’s Ataxia Research Alliance (FARA) is hosting a Research Flash Talk series covering ongoing studies of gene and protein function, as well ... Read more

May 13, 2020May 11, 2020

Playing the Cards We’ve Been Dealt

Columns, Little Victories - a Column by Matthew Lafleur

The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree ... Read more

May 11, 2020May 11, 2020

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

News, syndicated

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. ... Read more

May 11, 2020May 8, 2020

Raise Awareness by Joining the ‘Lend Us Some Muscle’ Campaign

Columns, Fighting FA - a Column by Frankie Perazzola

May is an exciting time for the FA community. It’s Friedreich’s Ataxia Awareness Month, a time for all of us who are affected to let our voices be heard! ... Read more

May 7, 2020May 7, 2020

COVID-19 Delays Planned Trial of PTC743 and Gene Therapy Work, PTC Says

News

The COVID-19 pandemic will delay development work on a potential gene therapy, and the start of a planned and possibly pivotal clinical trial in the small molecule treatment PTC743, both ... Read more

May 7, 2020May 6, 2020

It’s OK to Ask Me About FA

Columns, My Darling Disability - a Column by Kendall Harvey

The biggest things in our lives tend to occupy most of our brain space, such as family, significant others, friends, jobs, goals, pets, finances, plans, and so on. I ... Read more

May 6, 2020May 4, 2020

Parallels Between 2018’s ‘Bird Box’ and the Coronavirus Pandemic

Columns, Little Victories - a Column by Matthew Lafleur

About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best ... Read more

April 30, 2020April 30, 2020

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

syndicated

As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the ... Read more

April 30, 2020May 5, 2020

This Year’s rideATAXIA Was Postponed, but We’re Not Giving Up

Columns, My Darling Disability - a Column by Kendall Harvey

Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA ... Read more

April 30, 2020April 30, 2020

Tiny RNA Molecules Involved in FA May Be Promising Treatment Candidates

News

Scientists discovered two microRNAs — tiny RNA molecules that control the activity of several genes — playing a key role in the development of Friedreich’s ataxia (FA) that may ... Read more

April 29, 2020April 29, 2020

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

Announcements

FFF Enterprises and BioNews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and ... Read more