Author Archives: Kelly
Senate Resolution passes – May 15 is National MPS Awareness Day
The Senate passed a resolution designating May 15, 2012 as National MPS Awareness Day! Thank you to Senator Graham and all our members who contacted their Senators. Senate Resolution 450
TEXT TO GIVE to provide hope for the future!
We launched mobile giving to help raise money for Society programs.
Text CUREMPS to 80888 to donate $10! Read more for details.
Senate Resolution passed, designating May 15, 2012 as National MPS Awareness Day!
On National MPS Awareness Day we spread awareness and celebrate our MPS family.
Give Your Child the Gift of Summer Camp!
Summer is not far away and camp can be the highlight of a child’s summer experience. Camping creates a connection to people and experiences that are not a part of …
Ultragenyx announces FDA and EMA granted orphan drug designation for UX003 for the treatment of MPS VII
On February 28, 2012, Ultragenyx Pharmaceutical Inc. announced that the FDA office of Orphan Products Development granted orphan drug designation for UX003 for the treatment of MPS VII. See the full press …
“Understanding Clinical Studies Involving Enzyme Replacement Therapy” (video)
The video entitled, “Understanding Clinical Studies Involving Enzyme Replacement Therapy,” is now available www.biomarinclinicaltrials.com/MPSIVA.html. It was developed to help educate patients about ERT (enzyme replacement therapy) clinical studies, share patients’ …
National MPS Society is now accepting Continuing Education Scholarship applications
Applications are now closed for this period. We will be making announcements on the 2012 recipients on or before May 15, 2012. Please contact Laurie Turner, Program Director at laurie@mpssociety.org …
Shire is now accepting applications for the ACES scholarship program
Now in its second year, the Shire ACES scholarship program is continuing last year’s success in recognizing academic achievement in the lysosomal storage disease (LSD) community. High-school graduates or GED …
February 29 is Rare Disease Day!
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012.
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, …
