Tuesday, November 18, 2014
9:30 AM - 9:55 AM
GH - Empire Ballroom V
ALD Connect was founded in 2013 to foster collaborative research on x-lined adrenoleukodystrophy (X-ALD), a rare neuro-metabolic disease. In the past year, ALD Connect has engaged patients in the governance of the organization, received funding from the Patient-Centered Outcomes Research Institute, and started building a nationwide systems infrastructure. ALD Connect will soon launch clinical studies on stopping and reversing symptoms of X-ALD in affected individuals. Ben Lenail, ALD Connect co-founder from Palo Alto, Calif., will give the patient perspective, while Massachusetts General Hospital's Alex Sherman and Bluebird Bio's Tara O'Meara will bring their respective clinical and industry perspectives.
Ben Lenail, Co-Founder and Board Member, ALD Connect
Tara O'Meara, Senior Director of Clinical Operations, BlueBird Bio
Alex Sherman, Director, Strategic Development and Systems, Neurological Clinical Research Institute, Massachusetts General Hospital
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