2012 SUMMER/FALL NEWSLETTER
We would like to invite you to participate in our annual AWARENESS DRIVE. During the months of August, September, and October, Parry Romberg Syndrome Resource, Inc. will be mailing out informational brochures to medical facilities across our country. Our goal is to distribute 100 letters and brochures during this time. If you have a particular facility that would benefit from this information, please notify us with an address by contacting email@example.com.
Great news for rare disease patients was legislated this week by congress for Including Provisions to Empower the FDA to Accelerate Approval of Lifesaving Treatments. According to the patient advocate organization, EveryLife Foundation for Rare Diseases, “July 10, 2012, Washington, DC – Yesterday President Obama signed into law The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187, bipartisan legislation that will spur the development of lifesaving treatments for 30 million Americans suffering from rare diseases.”
The Act provides the following:
- accelerated patient access to new medical treatments
- the development of Humanitarian Use Devices (medical devices for small patient populations)
- accelerated development of "breakthrough therapies" -- those that show early promise
- enhanced FDA consultation with rare disease medical experts
- a rare pediatric disease priority review voucher incentive program
- resolution of conflict-of-interest issues that kept voices of rare disease medical experts from being heard
To learn more, http://www.biotech-now.org/health/2012/07/fda-safety-and-innovation-act-a-monumental-step-forward-for-patients-with-rare-diseases .
We look forward to hearing from patients and their families as we continue our mission to increase Awareness and Early Diagnosis of Parry-Romberg Syndrome.
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