01
International Niemann-Pick Disease Alliance (INPDA)
A global network dedicated to supporting those affected by Niemann-Pick disease. They work to promote research, raise awareness, and advocate for improved treatments and a cure. Visit their website to learn more: https://www.inpda.org/
02
International Niemann-Pick Disease Registry (INPDR)
A global, patient-led database dedicated to Niemann-Pick diseases. It collects clinical, genetic, and patient-reported data to support research, improve patient care, and facilitate the development of new treatments. Visit their website to learn more: https://inpdr.org/
03
Rare Voices Australia (RVA)
The national peak body for Australians living with a rare disease. They advocate for policy changes and improvements in health, disability, and other systems to better support the estimated two million Australians affected by rare diseases. Visit their website to learn more: https://rarevoices.org.au/
04
Childhood Dementia Initiative (CDI)
Dedicated to addressing the urgent needs of children suffering from over 100 genetic disorders that cause dementia, including Niemann-Pick disease. Their mission is to drive awareness, research, and advocacy to improve the quality of life for affected children and their families. By focusing on the commonalities of these disorders, they aim to fast-track effective therapies and ultimately find a cure. Visit their website to learn more: https://www.childhooddementia.org/
05
Neurological Alliance Australia (NAA)
The Neurological Alliance Australia (NAA) is a national coalition of not-for-profit organisations working together to improve the lives of people affected by neurological conditions. The alliance advocates for coordinated care, greater awareness, and better access to treatment, services, and research for individuals living with neurological disorders across Australia. Visit their website to learn more: Neurological Alliance Australia