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FARAFARA Cure FA

 

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.

 

Get Involved: Friedreich’s Ataxia Patient Focused Drug Development (PFDD) Meeting

news02202017
Get Involved: Friedreich’s Ataxia Patient Focused Drug Development (PFDD) Meeting.
Tell the FDA what is important to you in finding a treatment for Friedreich’s Ataxia

 
To learn more about the PFDD meeting and how you can contribute, click HERE.
 
An upcoming Friedreich’s ataxia (FA) Patient Focused Drug Development (PFDD) meeting with the U.S. Food and Drug Administration (FDA) is your opportunity to tell FDA and drug developers about challenges and burdens you have experienced with FA, and share your thoughts about what is most important to you in evaluating potential new treatments for the disease.
 
The meeting, co-organized by the Friedreich’s Ataxia Research Alliance, Muscular Dystrophy Association and National Ataxia Foundation, marks the first time patients and families affected by FA will be able to speak directly to the FDA and share their experiences in their own words.
 
Information captured at the meeting, summarizing input about the patient experience from people with FA across the country, will be published in a “Voice of the Patient” report and submitted to the FDA for inclusion in the framework used to evaluate future FA therapies.
 
There are several ways you can get involved:

  • Attend the PDFF meeting in Bethesda, Md. on June 2, from 8 a.m. – 12:30 p.m., at the College Park Marriott and Conference Center.
  • If you cannot attend in-person, join online via streaming webcast and share your input on the specific panel questions, as well as demographic questions.
  • Keep an eye out for future communications and surveys through which you may be able to contribute your thoughts.

No one can make the voice of the FA community heard more than those impacted by the disease. Your participation is critical to making sure our collective voice makes an impact. Don’t miss out on the opportunity to make sure your input helps guide the development of successful, effective, meaningful treatments for FA.

2nd International Ataxia Research Conference - September 27-30, 2017 - Pisa, Italy

The 2nd International Ataxia Research Conference will be held on September 27-30, 2017 in Pisa, Italy. The focus of the meeting is a comprehensive scientific review of new research from disease definition to therapeutic treatments. The conference will include Friedreich’s ataxia and other recessive ataxias (eg: ataxia with oculomotor apraxia), dominant ataxias (eg: spinocerebellar ataxias, DRPLA, episodic ataxias) and autoimmune ataxias.

Family, neighbors unite to fight genetic disorder


Kristin and Ben Morrow, of Anneslie, invite you to attend a free private screening of an award-winning documentary, "The Ataxian," at The Senator Theatre on Thursday, Jan. 12 at 7:00 p.m. The feature-length film captures athlete Kyle Bryant during the Ride Across America bike race, a grueling nine-day journey from Oceanside, California to Annapolis, Maryland.

Read the full article HERE

The latest Advocate Newsletter is available

The Winter 2016 - 2017 Advocate is now available.

The Advocate is FARA's newsletter. It provides updates on FARA's activities including funded research, scientific conferences, and fundraising events.

Click HERE to view our latest Newsletter
 

FARA Job Posting: Patient Engagement Director

Click to view PDF
FARA is seeking a full time Patient Engagement Director.

Please click HERE for more information.

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