On Feb 17, Deb Russo of MdDS Balance Disorder Foundation told us that Governor Deval Patrick has signed the 2010 proclamation declaring Massachusett’s observation of Rare Disease Day!
We would also like to thank the Helping Hands Club at Massasoit Community College in Brockton, Massachusetts for their part in securing this proclamation.
Display in Children’s Hospital Boston Lobby
Date: Feb. 22-28, 2010
Location: Boston, MA
Meghan Connolly of The Manton Center for Orphan Disease Research (Children’s Hospital Boston) created a paper link chain with over 350 rare diseases that do not currently have ongoing clinical trials. The chain is over 60 feet in length and will be hung in a highly visible location in the Children’s Hospital Boston main lobby. A poster will be displayed under the chain explaining what it represents, and several other advertisements will be displayed throughout the hospital. “I think this really expresses the tag line ‘Alone we are rare, Together we are strong’,” Meghan said.
Celebration of Hope
Genzyme Corporation will host an event called “Celebration of Hope” on the evening of Thursday, Feb. 25, at which it will launch an exhibit of artwork created by lysosomal storage diseases patients. The exhibit, “Expression of Hope II”, shares what it’s like to live with a lysosomal storage disease. A NORD representative will speak.
Alexion
Alexion Pharmaceuticals will host a Lunch & Learn for its staff, patients and families on Friday, Feb. 26. A NORD representative will speak.
