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Family Corner

Welcome to the Sanfilippo Children’s Foundation’s Family Corner, a resource-rich section of the website specifically for families with children battling Sanfilippo Syndrome.

This section has information to help navigate caring for a child with complex medical needs, learn who's who in the Sanfilippo space and fully understand the current research landscape. 

 

 


Subscribe to our e-newsletter & Family updates

Stay informed by subscribing to our quarterly e-newsletter.

 

We also have  a family updates list so the Foundation can communicate privately with the families of children with Sanfilippo Syndrome. Don't receive our family updates? Please email us at info@sanfilippo.org.au with subject heading: Subscribe Family Updates.

 

Join Patient Registry

 

The Sanfilippo Children's Foundation urges all families with children living with Sanfilippo Syndrome (also known as MPS III) to register their details with the Connect MPS Patient Registry .  This data in the registry will help the MPS community, medical community, researchers and pharmaceutical companies to better understand the n 

 

Register your child here  

  

 

Research News  & Glossary

 

For research-specific news, this news channel offers further analysis and explanation of scientific breakthroughs and annoucementsFor more, click here

 

 

 

When a child is diagnosed, families go on a steep learning curve, learning medical terminology to help fully understand their child’s condition.

 

This occurs at a time of extreme stress. This handy glossary contains common words relating to Sanfilippo. For more, click here

 

 

Meet other families

Click here to read about some of the other Australian families who have children battling Sanfilippo Syndrome their respective paths to diagnosis and how each family copes with raising a terminally-ill child or children. 

 

While there is no current cure or treatment, these families personify hope. Many of these courageous families have joined the Sanfilippo Children's Foundation in its fight to help fund clinical research.  

 

          

 

 

What is a clinical trial?

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. Parents and guardians choose to enrol their children in clinical trials for a range of reasons, including a desire to provide optimal care for their child and to contribute to improving the treatment and care of future generations of children. 

 

For more information on clinical trials andfurther reading, click here  

 

 

 

Please read and review the latest information from our Resource Centre:

 

  • Current Research Programs
  • What is Sanfilippo? (PDF)
  • Therapy Avenues for MPSIII (PDF)
  • Medical Research Programs for MPSIII (PDF)
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    Rare disease organisations 

    There are various peak bodies and advocacy groups around the world that collectively represent rare diseases.


    Click here for more.

     

    Sanfilippo organisations 

    There are many similar-sized Sanfilippo organisations around the world  parent advocacy groups and Foundations in the USA and Europe. The Sanfilippo Children's Foundation actively works with many of these groups. 

     

    Click here for more. 

    Support organisations

    There are various state and national disability support groups offering respite and information resources for the families of children battling Sanfilippo Syndrome.

     

    Click here for more.

     

    Special complimentry offer with CXC Financial Planners for Sanfilippo families

     

     CXC Financial Planners has partnered with the Sanfilippo Children's Foundation to offer complimentary financial services to families with children battling Sanfilippo. They can meet clients in person in Sydney, Melbourne or Brisbane. Families outside these cities can work with CXC via phone and video link.  For more information and to review the offer, click here 

     

     

     

    Find downloadable factsheet & order information resources

     

     

    Need brochures to give to your GP, OT/speech therapist or primary/preschool teacher? Please email us at info@sanfilippo.org.au and we will post you brochures to distribute.

     

     

     

     

    Order your own copy of our Year in Review document. We have copies of the 2015 and 2016 documents available. Please email us info@sanfilippo.org.au and we will post you a hardcopy.

     

    Soft copies available to download here: 2015 and 2016

     

     

     

     Order a SCF cap or T-shirt

     

         

    We encourage children with Sanfilippo and family members and caregivers to wear our Sanfilippo Children's Foundation caps and T-shirts to help raise awareness of our cause and the vital work of our Foundation. We offer family members of children with Sanfilippo a 50% discount and the child themselves a free T-shirt upon request. (All merchandise purchased helps to fund research programs.)
     
    If you would like to order a t-shirt for yourself or your child, please email your size and request to: info@sanfilippo.org.au Check out the range in our online store here