27Aug

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

Share the post “Rose F. Kennedy Intellectual & Developmental Disabilities Research Center Newsletter.” FacebookTwitterGoogle+PinterestE-mail 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 […]

14Aug

The Quest To Find The Patients For A Rare Disease

Share the post “The Quest To Find The Patients For A Rare Disease” FacebookTwitterGoogle+PinterestE-mail 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, […]

30Jun

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

Share the post “Luau at Lakside Prospect Park, you won’t want to miss this!” FacebookTwitterGoogle+PinterestE-mail 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 […]

05Jun

Read about JJB in “INDICATIONS” Newsletter!

Share the post “Read about JJB in “INDICATIONS” Newsletter!” FacebookTwitterGoogle+PinterestE-mail   “INDICATIONS” is the newsletter of the NIH-funded Lysosomal Disease Network.   They have been put a spotlight on Patient Advocacy Groups and done a great article on Jonah’s Just Begun.  Below you will find the article as it is written.  The May 2015 issue […]

Latest Videos

Jonny Lee Miller – Running For A Sanfilippo Cure

Elementary star Jonny Lee Miller is running 50 miles to raise money to cure a rare and fatal disease called Sanfilippo. Hear him talk about his training and why he is running. Catch Elementary Thursdays at 10/9c. Only CBS