This website is sponsored by the National Gaucher Foundation (NGF) for young people with Lysosomal Storage Disorders (LSDs). It is meant to stimulate conversation and activity among individuals living with one of many LSDs, including Gaucher Disease. It is our hope that this will be a place where kids from 6 to college age can discuss topics related to their lives and help others in the process. Through the exchange of ideas, solutions and caring for one another, each person can make a difference in someone’s life and can have a positive influence. For those individuals who do not know anyone else with their particular LSD, it is a way to meet and talk to someone who may be going through similar life experiences.
Please respect this site and the rights of others and remember that anything you post or upload becomes public . Should you wish to ask questions or correspond with Mandy or Tori, you can email them directly or post them on the Bulletin Board. You will note that we have a special section called Ask Mandy and Ask Tori. Both Mandy and Tori have an LSD and have quite a bit of experience in many of the situations in which one might find themselves after diagnosis of one of these diseases.
Security
Bulletin Board: To ensure integrity of the Bulletin Board, should anyone try to post content that is vulgar, inappropriate or profane, the programming of the Bulletin Board will take over. Each time an inappropriate word is typed, it will be replaced by a series of stars. All postings to the Bulletin Board will be reviewed by the NGF prior to public posting.
Photos and Videos: For your protection, all uploaded videos will be held in a que for review and posting will be delayed by at least a day (not including weekends). After an NGF review, the photos and videos will either accepted or declined. If you do not see your video posted within 2 days (not including weekends), chances are that it was declined. If you have any questions about your video or photo, please email us at
Disclaimer
The National Gaucher Foundation (NGF) has provided this website for the enjoyment of children and young adults for entertainment, education, information and support only. Nothing contained herein is intended to be instructional for medical diagnosis or treatment. The information contained in these topics is not intended, nor implied to be a substitute for professional medical advice. Medical information on this Web site, if any, does not represent advice regarding medical diagnosis or treatment, referrals to health care professionals, endorsements of health care products or any other recommendations. Any medical information on this Web site should not be relied upon as a substitute for consultation with your doctor or other qualified health care professionals.
Although the NGF makes a conscientious effort to provide high quality content and information, we disclaim any implied guarantee about the accuracy, completeness, timeliness or relevance of any information. Information on this Web site is to be used for entertainment, educational, informational and support purposes only.
Links from this website to non-NGF websites does not constitute an endorsement or referral of the non-NGF sites. NGF makes no representations or claims as to information or materials provided by such non-NGF websites, and specifically disclaims any warranties, expressed or implied.
Parent information on Children's Privacy Act
If your child is under the age of 13 and requires parental permission to visit this site, and exchange information with others, please read the following 'Privacy' information at the links below. The only information collected at the GaucherKids website is your child's email address, a ficticious nickname and password. The website specifically requests that users do not use their real name. Should the user choose to email someone privately and include their real name, this is beyond the control of the National Gaucher Foundation. Any information requested is strictly for the functionality of the system that drives this website. None of this information will be utilized in any way by the National Gaucher Foundation, nor will it be shared with any third party entity. Click any of the links below for the Children's Privacy Act.
Kidz Privacy website:
Children's Online Privacy Protection Rule:
Federal Trade Commission:
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