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FARAFARA Cure FA

ADVOCACY ALERT: United Rare Disease Day of Action for #CuresNOW

Dear friends of the FA Community,

The National Organization for Rare Disorders (NORD), in full collaboration with Global Genes and the EveryLife Foundation, has issued the Advocacy Alert below in support of the 21st Century Cures Act, which is the bill we all want congress to pass as soon as possible during the "lame duck" session that begins Tuesday, November 15. This bill contains many provisions that will help advance medical research and development, especially for rare diseases such as FA. Among those provisions are measures that would provide the NIH and FDA with the resources they need to research, develop and approve new therapies and to incentivize our bio-pharmaceutical industry partners to focus on rare diseases.

FARA encourages you to to read the excellent NORD letter, to click on its link providing you the phone numbers of your U.S. Senate and House representatives and to call the offices of your representatives right away to share your story as someone living with a rare disease for which there is no treatment and urge them to support the 21st Century Cures Act. The letter also provides some tips on how to raise awareness on this important initiative via social media.

It is very important that you do this right away because the congress has just this week and two legislative weeks in December to pass this very important bill. This is their last chance because a new congress with new members convenes in January, the 21st Century Cures Act would have to start all over again in the legislative process and some provisions very important to all of us could not be resurrected. So, please take action right away, and please share this effort with their family and friends. Thank you very much.

Warm regards,
Ron Bartek
FARA President

Brigid Brennan
FARA Board Director

ADVOCACY ALERT

United Rare Disease Day of Action for #CuresNOW
A Partnership with EveryLife Foundation, Global Genes & NORD
Tuesday, November 15, 2016 - 8:30 am ET / 5:30 am PT

ADVOCACY ALERT 2

Dear Friends,

As you may know, Congress has spent two years developing legislation that could be a game-changer for rare disease patients called the 21st Century Cures Act (Cures for short). We have reached a critical juncture for Cures as time is running out for Congress to pass the bill. The legislation must pass this year, otherwise all the hope and work that has gone into it will be lost. We cannot let rare disease patients down.

We are announcing a United Rare Disease Day of Action scheduled for Tuesday, November 15th. On that day, we ask that you click the alert link below ("CuresNow Action Alert") at 8:30am ET to connect with your representative, and share it on social media using the hashtag #CuresNOW. We will be hitting the phone lines to make sure Congress gets our message loud and clear.

CuresNOW Action Alert (click HERE)

As a reminder, 21st Century Cures contains new funding for NIH, FDA, along with vital incentives to bring new treatments to patients including the OPEN ACT and an extension of the Rare Pediatric Disease Priority Review Voucher program. We must remind our elected officials that time is running out for rare disease patients. Further delaying this legislation will result in delays in the discovery, development and delivery of life-saving treatments. Together, the rare disease community can ensure that 21st Century Cures becomes law.

Sample Tweets:

  • #RareDisease patients need #CuresNow without any further delay http://bit.ly/2fD5XRj

  • 700+ patient & physician organizations support #CuresNow http://bit.ly/2fD2uCt if you're on the #Path2Cures with us!

  • #CuresNow is a "once in a generation" opportunity to improve healthcare for #raredisease patients http://bit.ly/2fD4fzm


Sincerely,

National Organization for Rare Disorders (NORD)
EveryLife Foundation for Rare Diseases
Global Genes

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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