Parent Project Muscular Dystrophy (PPMD) founding president and CEO Pat Furlong, has been invited to speak today at the Institute of Medicine's (IOM) Roundtable on Translating Genomic-Based Research for Health. IOM is holding a public workshop today in Irvine, CA titled "Improving the Efficiency and Effectiveness of Genomic Science Translation."
Pat is a member of IOM's Committee on Pediatric Studies and is thrilled to be participating in the discussion "The Role of Advocacy in Facilitating Basic Scientific Research" at this important roundtable. "Advocacy has never played a more important role in the fight to cure rare disease, than it does today. As a patient advocacy group, it is critical for our voices to be heard in Washington. This is what IOM stands for and why they were created. To help amplify voices like PPMD's. They also understand that it takes creativity, thinking outside of the box, to reach the ears of the federal government and I am humbled that they have chosen me to participate in this discussion. PPMD has done and continues to do everything it can to end Duchenne muscular dystrophy. And our history advocating in Washington has shown us that it will take more than just a miracle drug or treatment. It will take the support of our nation's leaders."
Adam C. Berger, Ph.D., the Senior Program Officer and Director for the Roundtable and a member of the board on Health Sciences Policy believes that this meeting is an important next step for the rare disease community and is excited to have Pat joining the discussion. "This meeting of the IOM Roundtable is an important vehicle for raising awareness and spurring discussion among decision-makers regarding the need to enable more efficient and effective translation of basic scientific discoveries and having leaders such as Pat participate ensures that the voices of the patient community are not only part of the discussion but also the necessary solutions."
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