Supporting Organisations

A variety of organisations exist to support the families and friends of children with Sanfilippo Syndrome. Below we have listed the key organisations you might like to explore for additional information and services beyond the Sanfilippo Children's Foundation.

PATIENT REGISTRY

Connect MPS Patient Registry

The Sanfilippo Children's Foundation and Connect MPS urge all families with children living with Sanfilippo Syndrome (also known as MPS III) to register their details and those of the patient (child).  

Connect MPS is a centralised database that connects families, researchers, industry and all stakeholders in the MPS and ML community. Visit Connect MPS 

FAMILY SUPPORT ORGANISATIONS

State and national disability support groups offering respite and information resources for the families of children battling the childhood dementia, Sanfilippo Syndrome.

Carers Australia

Carers Australia is the national peak body representing Australia’s carers. It delivers a range of essential national carer services including advocating for policy change. Visit Carers Australia 

Courageous Parents Network 

Courageous Parents Network or CPN is a destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child. Within this network, you will find information, skills, tools and virutal support from fellow parents and pediatric care providers to help you be the best parent you can be to your child and children during the illness journey. Visit Courageous Parents Network 

Variety

Variety helps special needs children and their families with financial support for things like wheelchairs, specialist equipment, therapy, and medical supplies, when they can’t afford it, and when government assistance isn’t available. Visit Variety 

Royal Far West

Royal Far West is a non-government organisation that provides health services to children living in rural and remote NSW. It works with health professionals, educators, local communities and government to give kids and families health and education support. Visit Royal Far West 

Source Kids

Source Kids is Australia's first magazine and online media channel for parents, carers and professionals of children with special needs. Visit Source Kids 

Bear Cottage

Bear Cottage is the only children's hospice in NSW – a very special place that's dedicated to caring for children with life-limiting conditions. It offers temporary respite, palliative care, end-of-life care, and bereavement support. Visit Bear Cottage 

Very Special Kids

Very Special Kids cares for children with life-threatening conditions by providing a children’s hospice and professional family support services including counselling and emotional support, bereavement support, sibling support, regional services, chidren's hospice. Visit Very Special Kids 

Hummingbird House

Hummingbird House is Queensland’s only children’s hospice. It provides short break stays, family wellbeing services, creative therapies, and care at the end of life for children with life-limiting conditions and their families. Visit Hummingbird House 

Steve Waugh Foundation

Steve Waugh Foundation's aims to enhance the lives of children and families affected by a rare disease by offering grants, family events and respite retreats.  Visit Steve Waugh Foundation 

Dementia Australia

As Sanfilippo Syndrome is a form of childhood dementia, the Sanfilippo Children's Foundation has partnered with Dementia Australia. Caregiver burden for Sanfiippo is significant and Dementia Australia offers a range of resources which families can access including a free dementia kit and confidential support via the National Dementia Helpline 1800 100 500. Visit Dementia Australia 

RARE DISEASE ORGANISATIONS

Peak bodies and advocacy groups around the world that collectively represent rare diseases. The Sanfilippo Children's Foundation actively works with these organisations and we encourage families to connect with them.

Rare Voices Australia

Rare Voices Australia (RVA) is Australia's National Alliance for rare diseases. It is a not-for-profit, non-Government registered company advocating for Australians impacted by rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system for those with rare diseases. Visit Rare Voices Australia 

Genetic Alliance Australia

Genetic Alliance Australia is a peak umbrella group for rare genetic conditions so rare they don't have their own support group. Genetic Alliance Australia facilitates contact between families affected by the same, or similar condition, and provides information about relevant support groups. Visit Genetic Alliance Australia 

Global Genes

Global genes is one of the leading rare diseases advocacy organisations in the world uniting rare patients, caregivers, advocates and clinicians. The non-profit organisation represents over 500 global organisations. Visit Global Genes 

NORD

NORD is a patient advocacy organisation dedicated to individuals with rare diseases. NORD, along with more than 260 patient organisation members,  is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and patient services. Visit NORD 

EURORDIS

EURORDIS is a non-government patient driven alliance of patient organisations repsresenting 745 rare disease patient organisations in 65 countries. Visit EURORDIS 

MPS SOCIETIES

MPS Australia

The Australian MPS Society is a non-profit organisation formed by parents, relatives and friends of those suffering from a range of rare genetic disorders known collectively as the mucopolysaccharide (or MPS) diseases. Visit MPS Australia 

National MPS Society

The National MPS Society exists to cure, support and advocate for mucopolysaccharidoses (MPS) and mucolipidosis (ML). Visit National MPS Society 

MPS Society UK

The MPS Society is the only registered UK charity providing professional support to individuals, families and professionals affected by MPS and related diseases throughout the UK. Visit MPS Society UK 

SANFILIPPO ORGANISATIONS

We collaborate with Sanfilippo organisations around the world to maximise the impact we can collective make to drive research for a world without Sanfilippo.