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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.


FARA Advocacy Newsletter - Feb 2021


Welcome to FARA’s first advocacy newsletter! 2020 brought many advocacy opportunities for FARA and the FA community, and 2021 is shaping up to be even busier! With the amount of material growing steadily, a separate newsletter was in order. You will still occasionally find time-sensitive information in the regular monthly newsletter but the majority of advocacy related material will now be shared here.

And what a great time for this newsletter to start! Rare Disease Day will be celebrating its fourteenth year on February 28th. There are many opportunities listed below where you can raise awareness for rare diseases in general, and FA specifically. Although legislative efforts will be U.S. based, there are many events that can be experienced remotely throughout the world. Hopefully, this information will ignite a desire to get involved. Advocacy is simply to change “what is” into “what should be.” Join FARA in making that change possible!

More...

Read the Full Advocacy Newsletter
 

Rare Disease Day is February 28th, 2021!

Choose one of these three placards to complete with something about you that you feel is strong or that makes you proud. You can print the placard, write in your response, snap a photo of yourself holding it, and post to social. Or you can write in your response on the placard electronically and post to social media.

Version 1 - I am ... and I have Friedreich's ataxia.

Version 2 - I am ... and I care about rare.

Version 3 - I am ... and I support FA research.

NAF and FARA welcome the 117th Congress

The National Ataxia Foundation (NAF), and the Friedreich’s Ataxia Research Alliance (FARA) welcome the 117th Congress.
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A Community Statement from Novartis Gene Therapies

Dear Friedreich's Ataxia Community,

We at Novartis Gene Therapies hope that you and your families have had a good start to 2021, and we would like to begin the year together by expressing that we deeply appreciate your collaboration and partnership and providing you with an update on our OAV401 program for Friedreich's ataxia (FA).

In recent months, we have been working closely with the FDA to progress OAV401 toward an Investigational New Drug (IND) application. Today, we are pleased to let you know that we expect to submit an IND by the end of 2021. An active IND will allow us to initiate the clinical investigation of OAV401 for the treatment of FA.

In other breaking news, our application for Orphan Drug Designation for OAV401 was granted by the FDA. Orphan Drug Designation is intended to facilitate and expedite drug development for rare diseases or conditions for which there are no current treatments available. We are pleased by this recognition from the FDA that we have provided sufficient scientific justification to support the clinical investigation of OAV401 for the treatment of FA.

Our FA advocacy partners are strong allies who have deepened our understanding of FA and the FA community as we advance our work on promising science with transformative potential for FA. We look forward to continuing to collaborate closely with them and the FA community broadly and commit to providing you with updates on a regular basis as we have more information available to share.

Sincerely,

The Novartis Gene Therapies OAV401 Development Team

To read more about Novartis Gene Therapies, visit: https://www.novartis.com/our-company/novartis-pharmaceuticals/novartis-gene-therapies

Monthly Update - February 2021


Dear friends,

As you will see below, 2021 is off to an active start in Friedreich's ataxia research, advocacy, and events. There are a number of enrolling clinical studies and trials, and FARA announced funding for three new grants awards. rideATAXIA just launched their new virtual campaign- the Coastal Challenge, and there are many training and engagement opportunities for Rare Disease Day at the end of the month. Below, you'll find information on all of this and more. As always, thank you for your active engagement in these efforts and our work to reach treatments and a cure for FA.

Sincerely,

Jen Farmer, Chief Executive Officer

More...

Read the Full Monthly Update
 

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