Parent to Parent programs offer parent to parent support as a core resource for families with children who have a special health care need, disability, or mental health issue. Through a one to one "match" experienced support parents provide emotional support to families and assist them in finding information and resources. Parent to Parent programs […]
Tag Archives | Gaucher disease
October is Gaucher Awareness Month
EVENTS October 8, 2013
October is Gaucher Awareness Month. The National Gaucher Foundation is holding the 8th Annual Gaucher Awareness Auction now until October 30. To see all the items being auctioned or to place a bid, please click here.
Gaucher’s Disease Type 2 and 3
MEDICAL NEWS January 25, 2013
If you are interested in Gaucher’s Disease Type 2 and 3 there is a Facebook page that you need to check out. The GT23 Foundation has a page that has information to help support families as well as fundraising information for treatment for those living with the condition. To visit the Facebook page, please click […]
Gaucher Leadership Forum
EVENTS September 21, 2012
The 4th Annual Gaucher Leadership Forum is taking place in Munich, Germany today and tomorrow – September 21 and 22. Genzyme sponsors the event that brings together several hundred people in the medical and research fields to discuss Gaucher disease and how patients are living with it and how they are being care for. For […]
National Gaucher Foundation Member Drive
MEDICAL NEWS July 16, 2012
Help the National Gaucher Foundation reach its goal of having 1000 members by the end of 2012. There are already over 500 members so far. Members have access to the Foundation’s newsletter as well as discounts on conference registration. For more information or to sign up, please click here.
Educational Meeting on Gaucher Disease
EVENTS January 20, 2012
The National Gaucher Foundation will hold an informational meeting on Gaucher Disease in Ft. Lauderdale, FL on February 26. The event will take place at the Double Tree from 12-3 in the afternoon. Lunch will be served. The session will offer attendees time to have questions answered about the treatment of Gaucher Disease. For more […]
National Gaucher Foundation Online Auction
EVENTS September 12, 2011
The National Gaucher Foundation will hold an online auction October 1 through October 31. The money raised from the auction will go to support education, awareness and research of Gaucher Disease. There is a huge selection of great items to bid on to help support a good cause. Please click here for more information on […]
Gaucher and Fabry Patient and Family Conference
EVENTS August 1, 2011
Mark your calendars for the Colorado Lysosomal Disorders Program Gaucher and Fabry Patient and Family Conference on August 27th. The conference will take place at Children’s Hospital Colorado from 9:00am to 11:30am. There will be a couple joint sessions as well as breakout sessions. Please click here for more information.
Gaucher’s Disease: An Overview
MEDICAL NEWS April 14, 2011
Gaucher’s disease is a rare lysosomal storage disorder that affects approximately 10,000 people worldwide. This disorder comes about when there aren’t enough glucocerebrosidase enzymes present to properly breakdown fat molecules and they begin to accumulate. This accumulation occurs within cell walls, and when it becomes too much, the cell swells to much larger than its […]
Gaucher Disease Web site
KIDS & PARENTS, MEDICAL NEWS January 27, 2011
Check out the Childrens Gaucher Disease Research Fund Web site. It is a great resource for families who are going through life with Gaucher Disease.