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News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.


PhRMA Honors Patient Advocates Ron and Raychel Bartek

WASHINGTON, March 18 /PRNewswire-USNewswire/ -- Pharmaceutical Research and Manufacturers of America (PhRMA) President and CEO Billy Tauzin today honored Ron and Raychel Bartek for their dedicated work driving awareness of Friedreich's ataxia, a debilitating, life-threatening, rare disease.

The Barteks are co-founders of the Friedreich's Ataxia Research Alliance, an organization dedicated to the pursuit of scientific research leading to treatments and a cure for the disease. However, they are more than advocates; they are also parents of Keith Bartek, who succumbed to Friedreich's ataxia recently at the age of 24.

Although there remains no approved medication to treat the disease, clinical studies are currently being conducted. However, such near-term hope was not always the case, as Raychel Bartek said: "When Keith was diagnosed, I asked the doctor what medicine she would prescribe for him. Her eyes were watering when she said, 'There's nothing he can take.'"

Regarding the lack of treatment options, Ron Bartek added, "The prognosis was awful for Keith."

Read More: PhRMA Honors Patient Advocates Ron and Raychel Bartek

Demystifying Medicine

Featuring Drs. Tracy Rouault and Kenneth Fischbeck along with Tom Trovinger, FA Patient and Jen Farmer, FARA Executive Director.

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FARA Congratulates Melissa Phares, ChairScholar Award Winner


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FARA Announces the 2010 Ataxian Athlete Initiative


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FDA Expands Commitment to Patients with Rare Diseases

Expanding on its commitment to facilitate the development and approval of safe and effective drugs for Americans with rare diseases, FDA is pleased to announce the newly-created position of Associate Director for Rare Diseases in the Agency’s Center for Drug Evaluation and Research’s (CDER’s) Office of New Drugs (OND).  Dr. Anne Pariser, has been selected as the new Acting Associate Director for Rare Diseases and the Agency will move quickly to fill the position on a permanent basis.  Dr. Pariser will report to the Director of the Office of New Drugs. 

The Associate Director for Rare Diseases will serve as CDER’s focal point to the rare disease drug development community and assist stakeholders and developers of drug and biologic products in navigating the complex regulatory requirements for bringing safe and effective treatments to patients in need. 

The Associate Director for Rare Diseases will also coordinate an initiative to develop CDER policies and procedures for the review and approval of treatments for rare diseases and to ensure appropriate training of CDER staff.  An important focus of this new initiative will be to ensure collaboration among scientists and clinicians throughout CDER, to promote the adoption of new scientific and regulatory innovations that will help facilitate timely development and approval of new treatments for patients with rare diseases.

Read More: FDA Expands Commitment to Patients with Rare Diseases

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