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.