The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the Senate passage of the Food and Drug Administration Reauthorization Act of 2017:
“Today the Senate joined the House in overwhelmingly passing the Food and Drug Administration Reauthorization Act (FDARA). NORD applauds the Senate’s bipartisan commitment to the individuals with rare diseases who rely on the Food and Drug Administration (FDA) to ensure the delivery of safe, innovative, and effective treatments.
The FDA user fee agreements passed today as part of FDARA are the result of months of negotiation between FDA and the medical product industry, with significant input from the patient advocacy community. Among other provisions, these agreements include the expansion of the FDA Rare Diseases Program; strengthening of the expedited review pathway for breakthrough therapies; development of a process through which real-world evidence can be utilized; continuation of the Patient-Focused Drug Development program; and the creation of the National Evaluation System for health Technology (NEST).
We actively support FDARA and the benefits it will bring to the rare disease community. By reauthorizing the user fee agreements, the Senate has acted to protect rare disease patients and prevent the forestalling of advancement at FDA. We thank the Senate for taking this important step, and we ask that President Trump sign FDARA into law as expeditiously as possible.”
The CFC or Combined Federal Cam-paign is a fundraising campaign the Federal Government offers its employ-ees to participate with each year. It begins Sept 1st and goes through Dec 15th. Federal employees are allowed to pick from over 200 registered nonpro-fits to contribute to. Many CFC fairs will be held at Federal facilities throughout the campaign. This allows employees to learn about the nonprofits and make their selections.
Please let friends and family members who are Federal employees know they can choose the Spastic Paraplegia Foun-dation to donate to. The SPF CFC num-ber is 12554. The following are exam-ples of Federal employees: law enforce-ment, mail personnel, VA or Veteran’s Administration employees, Medicare, Medicaid, military and many types of governmental jobs. If donors want to know more, please have them log on to
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