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News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.


Monthly Update - November 2020


Dear friends,

It is with great excitement that I write to you about the upcoming FARA Energy Ball. While this event like many others is going to be different this year, it also opens up the opportunity for more people to participate in the Energy Ball than ever before.

On Saturday, November 7th, FARA will be hosting the Virtual 2020 FARA Energy Ball. The pre-show will begin at 6:30pm EST followed by the main event Broadcast from 7:00pm - 8:00pm EST.

More...

Read the Full Monthly Update
 

Monthly Update - October 2020


Dear friends,

In October, I usually enlist my local friends and family to assist the staff at rideATAXIA Philly near FARA'S home office. This year, rideATAXIA is moving from our neighborhood to yours with the first ever virtual rideATAXIA Global Challenge, and we want EVERYONE to join us. Our goal is to log enough miles to circumnavigate the globe in 30 days, while raising funds and awareness for FA research. As our participants log miles, we will travel virtually around the globe, via Google Earth, to "visit" different FA research and clinical locations and meet the people behind the research.

I am excited for the opportunity to bring together FA academic researchers, advocacy organizations, clinicians, industry partners, and the patient community. When we all work together as one team, we advance FA research with the sense of urgency needed to find treatments and a cure for FA.

I set an activity goal of to contribute 60 running miles to help get our team around the Globe this month. We launched the challenge on September 25th, but there is still time to join by clicking HERE.

As always, thank you for your support.

Sincerely,

Jen Farmer,
Chief Executive Officer

Read the Full Monthly Update
 

New ICD-10-CM Diagnosis Code G11.11 for Friedreich’s Ataxia Effective October 1, 2020

A new diagnosis code has been approved for Friedreich’s ataxia by the Centers of Medicare and Medicaid Services (CMS), effective October 1, 2020. The new code, ICD-10-CM G11.11, is to be used by clinicians to document the Friedreich’s Ataxia (FA) diagnosis in medical records and is used by health insurance companies to determine coverage approval for claims.

The International Classification of Diseases (ICD) coding system was established by the World Health Organization; currently used by ~100 countries for reporting cause of death and other epidemiology statistics. The system contains codes for diseases, symptoms, abnormal findings, social circumstances, and external causes of injury. ICD-10-CM codes, or diagnosis codes, are used by clinicians to document the need for healthcare services.

When the U.S. converted from ICD-9 to ICD-10 in 2015, the code for FA became less specific because it covered a group of conditions described as “early-onset cerebellar ataxias”. The Friedreich’s Ataxia Research Alliance (FARA), along with physicians in the Collaborative Clinical Research Network in FA, recognized a need for greater specificity and initiated the request for an FA specific code.

FARA Chief Executive Officer, Jennifer Farmer said, “We believe the new FA specific ICD-10 code G11.11 will lead to fewer rejected health insurance claims, help monitor outcomes of clinical management guidelines, and enhance ability to evaluate symptom progression and track disease prevalence.”

Fact sheets regarding use of the new ICD-10 code G11.11 are available for patients and clinicians at curefa.org/care

 

Global, multi-stakeholder, consortium launched to study neuroimaging biomarkers for Friedreich Ataxia

FOR IMMEDIATE RELEASE

A Natural History Study to TRACK Brain and Spinal Cord Changes in Individuals with Friedreich Ataxia (TRACK-FA)


Downingtown, PA (September 24, 2020) - The Friedreich’s Ataxia Research Alliance (FARA) and partner organizations proudly announce an international consortium of academic, industry, and patient advocacy partners to launch a natural history study to TRACK brain and spinal cord changes in individuals with Friedreich’s ataxia (FA). Friedreich’s ataxia is a rare debilitating, life-shortening, degenerative neuro-muscular disorder. About 5,000 people in the United States and 15,000 worldwide live with FA.

Read More Here

 

rideATAXIA Global Challenge

What is the rideATAXIA Global Challenge?

We invited some friends from around the world to help us explain in this video.


To Join Us:

Register Today



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