Support

No one should have to navigate NF alone. Here you’ll find the people, groups, and services that are here to walk alongside you. Whether you’re looking for medical guidance, emotional support, or simply someone who understands. From local networks to specialised organisations, these supports are here to help you and your family every step of the way.

Kiind provides practical assistance, emotional support, connection to other families and help to find the most appropriate services and supports for children and their families. They support 6,750+ families in Western Australia and all services are provided free-of-charge.

Click Here!

Neurological Council of WA offer services and support to individuals, families and carers across metropolitan and regional WA. Through nurse-led care, health system navigation and peer support, we help people understand their condition, access the right services and stay connected in their communities.

Click Here!

The Children’s Tumour Foundation (CTF) is a patient advocacy and support service for kids, adults and families impacted by all types of neurofibromatosis, or NF, including NF1, NF2-related schwannomatosis (NF2-SWN) and schwannomatosis (SWN)

Click Here!

The Stan Perron Clinic, part of the Perron Institute, offers specialized neurological care for complex conditions such as neurofibromatosis. The clinic provides expert diagnosis, management, and treatment by a multidisciplinary team to support patients with neurological disorders.

Click Here!

The mission of the Genetic and Rare Diseases (GARD) Information Center is to help the rare disease community meet these common challenges. We support the rare disease community both through our website and through the dedicated Information Specialists in our Contact Center.

Click Here!

Sexual Health Quarters is a sexual health clinic located in Northbridge, Western Australia. It provides confidential testing and treatment for sexually transmitted infections (STIs), contraception services, cervical screening, medical abortion, and counselling focused on sexual health and relationships. The clinic offers professional, respectful care and support to individuals of all backgrounds.

Click Here!

Our Stories

Want to know more about people living with neurofibromatosis? Click the button below to explore their stories, challenges, and victories. By sharing in their own words, they offer a real glimpse into life with NF, reminding us all that no one has to face it alone.

Facebook Groups

These Facebook groups offer support and connection for people affected by neurofibromatosis. They provide a place to share experiences, find encouragement, and connect with others who understand.

Neurofibromatosis Association of Western Australia
https://www.facebook.com/groups/177109285778295/

Faces of Neurofibromatosis
https://www.facebook.com/groups/FacesOfNeurofibromatosis/

Support

Our Stories

Facebook Groups

NF Community Registry