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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 Flash Talk Series - Part 2 - May 13th


FARA is proud to share our second Flash Talk - featuring Young Investigators from FARA funded laboratories around the world. This four-part series covers key aspects of FARA funded research from gene silencing and disease mechanisms to therapeutic avenues and clinical insights. Each session includes Flash Talks from four to five Young Investigators (ie, postdocs and graduate students). We also allot time for a brief Q&A following the talks.

Click HERE to register for future sessions. You will have the option to select which sessions you wish to attend.

Introducing The FA App!


Dear FA Community members, 

I am pleased to inform you of a new information and connection tool available for free right on your phone- Introducing The FA App!

It allows all community members (Individuals with FA, family, friends) to: 

  • Connect with one another
  • Read the latest FA news and blogs and see useful questions & answers
  • Have access to all kinds of useful tools like appointment trackers and gratitude journals
The FA App mission is stated as: Power the Cure! It's mission is to connect and empower individuals with FA worldwide so we can all participate meaningfully in finding a cure for FA.

Please download the App now and share it with all members of our broader FA community.

FARA is proud to be a launch partner of The FA App. You can find links to the app stores at www.theFAapp.org or you can just search for ‘The FA App’ in either AppStore or Google Play.

Sincerely,
Jen

Jen Farmer,
FARA CEO
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FARA is proud to present: The first FA Research Flash Talk!


FARA is proud to present our Flash Talks series - featuring Young Investigators from FARA funded laboratories around the world. This four-part series will cover key aspects of FARA funded research from gene silencing and disease mechanisms to therapeutic avenues and clinical insights. Each session will include Flash Talks from four to five Young Investigators (ie, postdocs and graduate students). We will also allot time for a brief Q&A following the talks.

Click HERE to register for future sessions. You will have the option to select which sessions you wish to attend.

Monthly Update - May 2021


Hello friends,

Welcome to May and the start of FA Awareness month! FA Awareness Day is just around the corner on Saturday, May 15th. We are excited to join our partner, fara- Australia's, Lend Us Some Muscle™ (LUSM) campaign. If you haven't had the chance to join yet, it's easy.

  1. Challenge yourself or a group of friends to do something active during May
  2. Or simply flex your muscles and share your pics on socials with #lendussomemuscle #lusm2021
  3. Go to give.curefa.org/lusm to make a donation
Thanks to a generous matching gift challenge by The Burrows Hill Foundation, the first $25,000 donated to this campaign will be matched dollar-for-dollar!
More...
Read the Full Monthly Update
 

FARA Advocacy Newsletter - April 2021


Rare Across America gave FA community members the first opportunity this year to speak directly to their Members in Congress but it won’t be the last! The issues discussed there are likely to be the ones that we see throughout 2021: robust funding for the NIH & FDA, development and access to rare disease therapies, telemedicine, and newborn screening, to name a few. As we move toward the summer and a virtual Rare Disease Week , FARA will continue to stay on top of developing initiatives that could impact FA research. This advocacy newsletter, FARA’s advocacy webpage, and virtual training sessions offered by FARA, and their advocacy partners will all help you get ready for Congressional meetings in July! Join your voice to those creating change!

More...
Read the Full Advocacy Newsletter
 
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