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Foundation Focus Newsletter
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
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 email the alert link below ("CuresNow Action Alert") at 8:30am ET to all the members of your organization along with friends and family, 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.
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.
#RareDisease patients need #CuresNow without any further delay
700+ patient & physician organizations support #CuresNow
RT if you’re on the #Path2Cures with us!
#CuresNow is a "once in a generation" opportunity to improve healthcare for #raredisease patients
National Organization for Rare Disorders (NORD)
EveryLife Foundation for Rare Diseases
Join Us! Save Lives, Support Cures
MGFA joins with Research America – an Alliance for Discoveries in Health to support Cures Now legislation. The 21st Century Cures Act (HR6) also known as Cures Now, aims to speed cures by removing barriers to collaboration; incorporating the patient perspective; modernizing clinical trials; and providing new incentives for the development of drugs for rare diseases, among other strategies for advancing cures. In addition, the bill calls for an investment of additional funding to the NIH ($1.75 Billion) and the FDA ($110 Million) for 5 years. Supporters also present the bill as ensuring America’s continued leadership in global medical and biopharmaceutical industries helping to maintain and develop hundreds of thousands of jobs. For more details see the bill summary here.
YOU CAN HELP to support needed action on this bill by visiting the Research America website where you can put in your zip code and find your representatives as well as send them a message or even a video. The site also has additional information and ideas to help advocates take action and make a difference. Congress needs to be galvanized into taking action on Cures Now and you can help.
For more information here are some other resources:
Energy and Commerce Committee website:
Rare Disease Day
February 29, 2016 is Rare Disease Day. For the MG Community this is a chance to bring attention to MG and the challenges we and all rare disease sufferers face.
What can you do?
Talk to friends, co-workers and neighbors about MG and about why rare diseases are such a challenge. If each of us spoke to 3 people just letting them know what MG is and the challenges those with MG face we could triple awareness on just one day.
Or, share your story on Facebook, YouTube or through other social media.
Pick up the
I Support Rare Disease Day image
, and post it to your social media.
Write your representative about MG and why more support for research is so needed.
Celebrate the theme of Rare Disease Day this year, “day by day, hand in hand” by taking a photo with your Support Group, family or friends and share it through
Visit the website and learn about all the events going on in the U.S.
To learn more about rare diseases and how to become involved visit the
National Organization for Rare Diseases
here in the U.S. or
the European agency that founded Rare Disease Day in 2008.
Sign up and
Find a local
Sign up and
Spring 2016 MG Walk Schedule - click
Alexion Pharmaceuticals Clinical Trial. Learn more
MG Treatment Guidelines - An MGFA Webinar
Stay tuned for upcoming webinar announcements
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