Category Archives: News
Register for the 26th Annual Family Conference!
The National MPS Society invites you to attend the 26th Annual Family Conference being held July 26-28, 2012 at the Boston Park Plaza Hotel in Boston, MA. Following the family conference, …
Call for research Letters of Intent – March 15 deadline
The National MPS Society is seeking to fund research projects that would be likely to generate strong preliminary data for major funding in the following areas (special consideration will be …
National MPS Society nominates MPS I to be considered for panel of recommended newborn screenings
The National MPS Society submitted the nomination form for MPS I to the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), for consideration of being added to …
The Painted Turtle is accepting applications for the Skeletal Dysplasia and MPS Summer Session
The Skeletal Dysplasia and MPS Summer Session at The Painted Turtle will be held June 15-20, 2012. Summer Camp provides an opportunity to share good times, and peer support with …
Shire has announced that they will be initiating a Natural History study for MPS IIIB
Official Title: “An Observational Prospective Natural History Study of Patients With Mucopolysaccharidosis Type III (MPS IIIB, Sanfilippo Syndrome Type B)” The purpose of this study is to evaluate the natural course …
New test spots early signs of inherited metabolic disorders
New test spots early signs of inherited metabolic disorders A team of scientists, led by researchers at the University of California, San Diego School of Medicine and Zacharon Pharmaceuticals, have …
Ultragenyx Pharmaceutical Inc. announced it has in-licensed an enzyme replacement therapy program to treat MPS VII
Ultragenyx Pharmaceutical Inc., a biotechnology company focused on developing treatments for rare and ultra-rare genetic disorders, today announced it has in-licensed an enzyme replacement therapy program from St. Louis University …
Join us! National MPS Society endorses the Unlocking Lifesaving Treatments for Rare diseases Act of 2012
Help support ULTRA! Take action by contacting your legislators! In December 2011, U.S. Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY), two senior members of the Energy and Commerce Committee, introduced …
Genzyme announces 2012 Co-Pay Assistance Program
Genzyme’s Co-Pay Assistance Program will help eligible individuals who are prescribed treatment with one of Genzyme’s enzyme replacement therapies with their eligible drug related out-of-pocket expenses, including co-pays, co-insurance and …
Shire announces 2012 OnePath Co-pay Assistance Program
Shire HGT is pleased to announce its new Co-pay Assistance Program for 2012 with 100% coverage for eligible expenses. Shire will assist eligible patients in the United States who have commercial insurance with …
