Scroll
To Top
0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

*Important

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Sanfilippo Children’s Foundation



Address

PO Box 475
Freshwater, NSW 2096 Australia

Email Address

info@sanfilippo.org.au

Description

Our mission is to fund medical research so a cure can be found for children battling Sanfilippo today and for those born with it tomorrow.
We aim to drive research, enable access to effective treatments and improve the quality of life for Australian children affected by the fatal childhood disease, Sanfilippo Syndrome. This will be achieved by:
• Enabling participation in clinical trials or special access to emerging treatments until such time as an effective treatment is developed and available on the market;
• Improving the diagnosis path – more accurate and earlier diagnosis to enable appropriate treatment;
• Raising awareness of the disease amongst the community, including the medical profession;
• Providing diagnosed families with clear, up-to-date information on the disease and the latest medical advances;
• Fundraising to achieve the above aims.

Facebook: http://www.facebook.com/Sanfilippochildrensfoundation/
Twitter Handle: @SFCFoundtn

Please Note

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.