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May 15 is International MPS Awareness Day!
On MPS Awareness Day we celebrate our MPS family and spread awareness of these diseases. We also honor Dr. Emil Kakkis, who developed Aldurazyme®, the enzyme replacement therapy for MPS I, and whose company, Ultragenyx, announced on MPS Awareness Day that a Phase 1/2 study of UX003 for MPS VII.
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Icahn School of Medicine at Mount Sinai collaboration with bene pharmaChem
Icahn School of Medicine at Mount Sinai announced an agreement with bene pharmaChem GmbH to collaborate on clinical studies for MPS. Research grants to Dr. Calogera Simonaro from the National MPS Society funded her early research with pentosan polysulfate.
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Thanks to YOU!
Thanks to your donations and fundraising in 2012, the Society’s Board of Directors approved an investment of almost $450,000 in new MPS research funds for 2013!
Read the letter from our Executive Director.
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27th Annual Family Conference
Registration is now open for the 27th Annual National MPS Society Family Conference! It will be held October 24–26, 2013, in San Antonio, Texas.
New this year — online conference registration!
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Become a member of the National MPS Society!
Have you renewed your membership with the National MPS Society?
Become a member to receive benefits and the latest news about the Society, fundraising events, research and more! Your membership brings us closer to achieving our goal of curing the debilitating diseases that affect our families and friends.
About MPS
Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body.
Get Involved
Education/Publicity
The Education and Publicity Committee provides an array of educational materials to assist our families and their communities, researchers and physicians in the journey of MPS.
Family Support
The Family Support Committee connects families to resources and provides conference scholarships, financial assistance for medical goods, continuing education scholarships.
Fundraising
The Fundraising Committee provides mentors and marketing tools to help fundraising hosts achieve success.