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.
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.
Dementia Support Australia (DSA)
DSA is an Australian government-funded service led by HammondCare, specialising in behaviour support for all Australians living with a form of dementia, including childhood dementias.
DSA can provide free, individually-tailored support to children affected by Sanfilippo syndrome, their families and carer networks. They have a specialised team of consultants who understand childhood dementia, and its impact on patients, carers and families. Consultants are able to provide timely, professional and pragmatic support to families through detailed assessments (typically in the home), and provision and assisted implementation of recommendations and management strategies. We encourage any family dealing with Sanfilippo syndrome-related behavioural issues to reach out to the service.
No referral needed. Simply call the 24-hour helpline on 1800 699 799, fill out the contact form or chat with them online. To learn more, visit the DSA Childhood Dementia Support page.
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
Carer Gateway is for anyone who is a carer. Carer Gateway is an Australian Government initiative that provides practical information and advice, access to services and support, free counselling services over the phone, free coaching and allows carers to connect with other carers through a community forum. Visit Carer Gateway
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 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
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 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
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 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 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
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
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
We collaborate with Sanfilippo organisations around the world to maximise the impact we can collective make to drive research for a world without Sanfilippo.