The annual Center for Neurofibromatosis (NF) and Allied Disorders (CNFAD) Symposium will be held on September 26, 2009. This event is designed to provide a forum for patients and families with NF1, NF2, or schwannomatosis and to unite the NF community by addressing current patient concerns and progress in the field. Dr. Bruce Korf will be the keynote speaker. For more information about this conference, please contact Allison Porter at allison.porter@childrens.harvard.edu or 857-218-4018.
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Emil Kakkis, M.D. Ph.D. spoke as the first Visiting Scientist of The Manton Center for Orphan Disease Research on September 9, 2009. Dr. Kakkis recounted the unique story of his experiences developing treatments for individuals with rare diseases. He also spoke about his current endeavors to make drug development processes more efficient. Thank you those who joined us for this event.
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The Manton Center is honored to have co-sponsored "Cockayne Syndrome (CS): Molecular Mechanisms and Translational Implications" which was held September 12-15, 2009 in Boston. The meeting's main goal was to foster new research initiatives and collaborations. Specifically, the focus was be on understanding the mechanistic basis of the features of CS.
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The first ever prospective and comprehensive study of patients with Galactosemia took place on August 21 - 23, 2009 in Boston. The Manton Center teamed up with the Parents of Galactosemic Children, Inc. (PGC) to fund the event which kicked-off the first comprehensive study on the long-term outcome of Galactosemia and, indirectly, the consequences of newborn screening. This event not only benefited the participants in attendance, but also documented the natural history of this orphan disease.
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The Manton Center for Orphan Disease Research partners with the International Skeletal Dysplasia Society (ISDS) to help sponsor their biennial meeting held in Boston from July 16- 19, 2009. ISDS is dedicated to promoting scientific progress in the field of skeletal dysplasias and dysostoses.
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The Manton Center Partners with National Organization for Rare Disorders (NORD) to Recognize National Rare Disease Day
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Children's Hospital Boston and The Manton Foundation Inaugurate The Manton Center for Orphan Disease Research
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