M@ri

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About M@ri

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So far M@ri has created 12 blog entries.

Anonymous Donor to Make a $20,000 Donation!

Tomorrow is Our Chance

images-1I KNOW! We are excited too.  If we can raise $10,000 tomorrow, #GivingTuesday, we will get a DOUBLE MATCHING donation of $20,000.  On top of that, the charity that raises the most will get a $25,000 donation from Crowdrise.

 

Please give what you can tomorrow, and urge […]

By | November 28th, 2016|Uncategorized|Comments Off on Anonymous Donor to Make a $20,000 Donation!

The National MPS Society, Patient Crossroads,  & Jonah’s Just Begun Presents: The ConnectMPS Registry

 

Join our webinar for ALL STAKEHOLDERS!

August 16, 2016 at 12pm EDT

The online meeting will take place via webinar.  To join please visit: http://join.me/386-537-239

TOGETHER WE CAN BRIDGE THE GAP

ConnectMPS is a patient registry, MPS and ML organizations are working together from […]

By | August 10th, 2016|Uncategorized|Comments Off on The National MPS Society, Patient Crossroads,  & Jonah’s Just Begun Presents: The ConnectMPS Registry

Heroes Among Us-Official Movie Trailer

Screen Shot 2016-07-07 at 4.02.29 PM Click the video to play trailer.

 

Don’t miss this summers greatest event, ‘Heroes Among Us’. Coming July 23rd, 2016. Tickets on sale now: http://bit.ly/JJBHeroes

By | July 7th, 2016|Uncategorized|Comments Off on Heroes Among Us-Official Movie Trailer

BBB for JJB

Bunco, Bid, & Boogie for Jonah’s Just Begun

Your are cordially invited to an evening filled with food, friends, music and auction.

To be held Friday, May 20th from 6:30-10:30 PM PDT

At Bella Via, Sherwood, OR

katie2Enjoy all that this event has to […]

By | April 26th, 2016|Uncategorized|Comments Off on BBB for JJB

Why neglected tropical disease and rare disease researchers need each other

Conversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The Catalyst welcomes guest contributors, including patients, stakeholders, innovators and others, to share their perspectives and point of view. Views represented here may not be those of PhRMA, though they are […]

By | February 25th, 2016|Uncategorized|Comments Off on Why neglected tropical disease and rare disease researchers need each other

Why Rare Disease Companies Need the Pediatric Rare Disease Priority Review Voucher

Why Rare Disease Companies Need the Pediatric Rare Disease Priority Review Voucher -Originally published by the Rare Disease Report

If there was a genetic lottery and you were picking out diseases, you would hope that you did not get 1 of the 7000 rare diseases – especially rare pediatric diseases. And the reason is […]

By | December 30th, 2015|Uncategorized|Comments Off on Why Rare Disease Companies Need the Pediatric Rare Disease Priority Review Voucher

Patients Can’t Wait

Patients Can’t Wait

Today, patient advocates from across the country will unite in a day of action to urge the Senate to make medical innovation a top priority. 

In July, the House passed historic legislation, called the 21st Century Cures Act, by a wide bipartisan margin (344-77!!!).  The bill contains vital provisions that […]

By | September 22nd, 2015|Uncategorized|Comments Off on Patients Can’t Wait

Rose F. Kennedy Intellectual & Developmental Disabilities Research Center Newsletter.

Living With Lysosomal Disease

In a break with the past, Einstein’s 2015 celebration of Rare Disease Day focused not on the idea of rare disease generally but instead highlighted the lives of individuals living with a distinct group of 60 syndromes known as lysosomal storage disorders (LSDs). This focus was chosen as a way of celebrating […]

By | August 27th, 2015|Uncategorized|Comments Off on Rose F. Kennedy Intellectual & Developmental Disabilities Research Center Newsletter.

The Quest To Find The Patients For A Rare Disease

The Quest To Find The Patients For Sanfilippo Syndrome Type D or MPS III D

For major diseases like diabetes, hypertension and cancer there are literally millions of patients, you probably know one or more person with one of these diseases, you may even have one of them. But when it comes to a rare disease […]

By | August 14th, 2015|Uncategorized|Comments Off on The Quest To Find The Patients For A Rare Disease

Luau at Lakside Prospect Park, you won’t want to miss this!

We are busy, busy, busy making Luau at Lakeside a fun event for the whole family.  If you haven’t heard about it head on over to our event page to see what it’s all about.

With splash pad, rollerskating, face painting, full luncheon and  a hula dancer, your kids and their friends […]

By | June 30th, 2015|Uncategorized|Comments Off on Luau at Lakside Prospect Park, you won’t want to miss this!