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Rare Disease Day 2012


February 29th, the rarest day of the year, marked 2012's Rare Disease Day.  The Manton Center commemorated the day by circulating several surprising statistics about how common rare diseases really are.  Read more at Dr. Alan Beggs’, the director of The Manton Center, blog published in Vector.  Dr. Beggs'  recently appeared on Massachusetts Medical Society's Physician Focus to raise rare disease awareness.

 

 



The first annual Orphan Disease Symposium was held on November 16, 2010 in the Folkman Auditorium. The Manton Center played a role in the establishment of this symposium, with many of our Senior Scientists presenting on their role in rare disease research. Dr. Mustafa Sahin, one of the 2010 Innovation Fund recipients will also be presenting.

Rare Disease Symposium Flyer

 


The Manton Center partnered again with the National Organization for Rare Disorders (NORD) to recognize National Rare Disease Day on February 28, 2010. The Manton Center was acclaimed as a host of a featured event by NORD and was mentioned on the the official Rare Disease Day Website. A 60 foot chain featuring the names of over 350 rare diseases with no ongoing clinical trials was displayed in the Boston Children's Hospital Main Lobby for the week leading up to Rare Disease Day.


The Manton Center was proud to sponsor the following five events in 2009. We look forward to sponsoring and hosting more events in 2010 to strengthen collaborations within the rare disease communtiy. Thank you to all our attendees and co-sponsors for making 2009 a successful year!


Experts in rare skeletal disorders from around the world gathered in Boston for The International Skeletal Dysplasia Society's (ISDS) biennial meeting. ISDS is dedicated to promoting scientific progress in the field of skeletal dysplasias and dysostoses.

International Skeletal Dysplasia Society Biennial Meeting
July 16-19, 2009

The Manton Center teamed up with the Parents of Galactosemic Children, Inc. (PGC) to fund the first ever prospective and 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.

Parents of Galactosemic Children Inc.
August 21-23, 2009

Emil Kakkis, MD, PhD spoke as The Manton Center's first Visiting Scientist. 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.


Emil Kakkis, M.D., Ph.D.
September 9, 2009

A conference entitled "Cockayne Syndrome (CS): Molecular Mechanisms and Translational Implications" was held in Boston this year. The meeting's main goal was to foster new research initiatives and collaborations. Specifically, the focus was on understanding the mechanistic basis of the features of CS.

Boston, Massachusetts
September 12-15, 2009

The annual Center for Neurofibromatosis (NF) and Allied Disorders (CNFAD) Symposium provided a forum for patients and families with NF1, NF2, or schwannomatosis and united the NF community by addressing current patient concerns and progress in the field. Dr. Bruce Korf was the keynote speaker.

Center for Neurofibromatosis and Allied Disorders at Harvard Medical School
September 26, 2009
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