The following events may be of interest to anyone affected by or interested in Glycoprotein Storage Diseases.
WORLD Lysosomal Symposium 2013
The WORLD Lysosomal Symposium is being held February 12- 15th at the Hilton Orlando, Orlando, Florida, USA
For more information and to register for this meeting go to www.lysosomaldiseasenetwork.org
Thanks to everyone who contributed fund to this event, more than $5,700 was raised. A very big thank you goes to the Gaslamp for the venue and the bands who participated CryWolf, Siren, Ronny North, Undivided and Mother Function.
International Rare Disease day
February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organizing awareness-raising activities converging around the slogan “Alone we are rare but together we are strong”.
Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!
This is an exciting opportunity for ISMRD to get involved and raise awareness and funds for our very rare diseases. What will you do to raise awareness?