Muse Event 2015
Photo Gallery
Sept 2015
MA Representative Paul Heroux
Sharing about HB.1977, An Act to Establish a Rare Disease Advisory Councilabout HB.1977, An Act to Establish a Rare Disease Advisory Council in MA, a bill he is sponsoring.
January 2014
March 2014
meeting sponsored by
MitoAction
Attorney Jim Ianari
and Jessica Shriver,
Please see publication page for event video.
Dr. Niyazov July 2015
Luncheon with Dr. Korson and Dr.Karaa December 2014
May 2015
Lunch with
Dr. Karaa
"Complex Care Challenges" with Dr. Karaa and Dr. Korson
April 30, 2016
Exercise and Physical Therapy with a Rare Disorders
Dr. Michael Healy spoke about Connective Disorders
First meeting, May 2013
Jessica Shriver spoke about ethics and the rare disease patients at Brandeis University Genetic Counseling Program in spring 2017.
Game Night Teen Event January 2017
RNE partnered with The Coalition Against Pediatric Pain
Please see particular event pages for pics of specific events!
