Subscribe to
this category

Community Events

A total of 190 posts are filed under Community Events
EveryLife Community Congress: New Agenda
Get the inside-track on our legislative initiatives and learn about the activities each working group is undertaking. This is your… Continue Reading
CureDuchenne Cares Hosts Inaugural Family Summit This October
The inaugural CureDuchenne Cares Family Summit, a complimentary educational seminar for families who have loved ones with Duchenne muscular… Continue Reading
Join Congenital Hyperinsulinism International for the Sugar Shindig, 10/8
Join Congenital Hyperinsulinism International during their Sugar Shindig this Saturday, October 8th 2016. This year’s event honors Dr.… Continue Reading
Screen Shot 2016-09-18 at 6.57.32 PM
Today is FH Awareness Day: Celebrate On Twitter!
FH Awareness Day (est. 2012) is a campaign initiated by the FH Foundation to raise awareness of FH in the general public. This annual event… Continue Reading
GRIDS2016 Symposium: Neurological Spectrum in Gaucher Disease
Organization: Lysosomal Disorders Unit Submitted by: Ozlem Goker-Alpan Time for our Gaucher Disease Type 2/3 families to get together! Dr.… Continue Reading
conference-meeting (1)
Join in for RDLA’s September Legislative Webinar & In-Person Meeting, Sept. 14th
Wednesday, September 14th: 3:00 pm to 4:00 pm EST  1101 14th St. NW Suite 700 Washington, DC 20005-5601 Agenda: H.R. 3742 – The Access… Continue Reading
“Staying Safe in a Medically Complex World” Rare New England Hosts Upcoming Conference
Organization: Rare New England Submitted by: Julie Gortze RNE is holding a 2-day conference on Nov 12 and 13, 2016 in MA to provide tools… Continue Reading