Family Conference News

27th Annual National MPS Society Family Conference

Registration is now open for the 27th Annual National MPS Society Family Conference! The conference will be held October 24–26, 2013, in San Antonio, Texas. Click here for details about the conference, including our conference scholarship program and NEW online registration!

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26th Annual National MPS Society Family Conference

This year’s family conference was held July 26-28, 2012 in Boston with over 400 attendees, all of whom had fun being together plus sharing and hearing new information.  Read more about it!

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Presentations from the 25th Annual Family Conference in
St. Louis, MO., July 2011

Click on the title of the presentation to view

Legislative Committee Presentation

Overview of MPS and Related Disorders
Lorne A Clarke, MD CM FRCPC FCCMG

Our Family’s Experience with Clinical Trials
Steve Holland, President

A Clinical Trial, Our Family’s Story
Melissa Hogan, MPS II Parent

Treatment Strategies – 2011 MPS Grants
Mark S. Sands, PhD

Clinical Trials Update for MPS II
Joseph Muenzer, M.D., Ph.D.

Clinical Trials
Barbara Wedehase, MSW, CGC

Lysosomal Disease Network, University of Minnesota
Elsa Shapiro, Ph.D.

Our Family’s Experience in the Natural History Study for Sanfilippo MPS IIIA
Jill McDermott

Healtcare Reform and Insurance
Sylvia Davila, BioMarin Patient & Physician Support

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25th Annual National MPS Society Family Conference

More than 300 people gathered July 28-30, 2011 in St. Louis, MO to celebrate our 25th annual conference during what was one of the hottest Julys on record. Read all about it!

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Presentations from the 24th Annual Family Conference in Knott’s Berry Farms, California

 

Click on the title of the presentation below to view

Austin Noll Legislative Committee Presentation

Austin Noll, MBA

MPS IV Clinical Trial: A phase I/II, multi-center, open-label, dose-escalation study to evaluate the safety, tolerability and efficacy of

BMN 110 in subjects with MPS IV A

Celeste Decker, MD

Developing a Novel Treatment for Sanfilippo A Syndrome

Patrick Haslett, MD

Overview of the Lysosomal Disease Network: A Rare Disease Clinical Research Newtork

Elsa G. Shapiro, PhD, ABPP, LP

Longitudinal Studies of Brain Structure and Function in MPS Disorders: Lysosomal Disease Network

Elsa G. Shapiro, PhD, ABPP, LP

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2009 Family Conference – Disney World

To celebrate its 35th anniversary, the National MPS Society hosted its 2009 family conference in Disney World at Disney’s Coronado Springs Resort, December 17-20, 2009. Click here for a recap of the Conference.