Useful Links

Explore our Useful Links page for Niemann-Pick Disease, where you'll find valuable resources, support organisations, and informative articles to help you navigate this condition.

Discover our curated list of links that can be easily filtered by one or more categories. Navigate effortlessly to find exactly you need, tailored to your interests.

Missing School	MissingSchool is an Australian non-profit organization dedicated to supporting children with chronic illnesses by keeping them connected to their classrooms and peers, ensuring they don’t miss out on education and social interactions. Their initiatives include using technology like telepresence robots to help these children stay engaged with their school community	Link
Rare Metabolic Disease Workforce White Paper	The key findings of the Rare Voices Australia white paper on the Rare Metabolic Disease Workforce highlight a significant shortage of skilled professionals needed to diagnose and manage rare metabolic diseases.	Link
Niemann-Pick Disease Foundation	Based in the United States, this foundation funds research and supports families affected by the disease.	Link
International Niemann–Pick Disease Alliance	A global organization focused on raising awareness and providing resources for those affected by Niemann-Pick disease.	Link
Mental Health Support Resources	Health Direct offers links to free mental health supports.	Link
Carer Gateway	Emotional and practical services and support for carers. Also has some great free self-guided courses such as: Dealing with stress, recharge and reconnect and sleep	Link
Siblings Australia	This organisation focuses on support for siblings of children and adults with disability, working with siblings, their families and professionals.	Link
Raising Children Network	This site provides a broad array of information for all parents and for those with children with impairments. It has sections that address key issues at different age groups and an online forum for parents of children with disability	Link
My Time	MyTime organises supported groups where parents and carers of children with disability or other additional needs can feel understood, share ideas and access quality information and resources.	Link
PlayConnect+	PlayConnect+ groups are open to all children with disability and/or developmental delay aged 0- 8 years, their families, carers and siblings. No diagnosis is required. All sessions will be facilitated by qualified professionals. PlayConnect+ is delivered by the State and Territory Playgroup Associations as part of a consortium led by Autism Queensland. Funded by the Australian Government Department of Social Services. It is also supported by the State Autism Associations.	Link
Envisage Community	ENVISAGE is a program co-created by Australian and Canadian researchers, clinicians, and most importantly parents of children with developmental concerns and disabilities. Our mission is to empower caregivers like you to feel confident and competent to navigate the experience of parenting a child or children with developmental concerns by embracing contemporary strengths-based ideas about health, wellbeing, and development.	Link
Services Australia	The Carer Payment is a financial support program in Australia for individuals who provide constant care for someone with a severe disability, medical condition, or who is elderly. Eligibility is based on various criteria, including the care recipient's needs and the carer's circumstances. This payment helps alleviate some financial burdens faced by carers.	Link
Australian Ethical Health Alliance	The Australian Ethical Health Alliance (AEHA) aims to enhance healthcare delivery in Australia by promoting ethical principles that prioritize patient interests, safety, and effective collaboration within the healthcare sector. They focus on improving public trust and access to quality healthcare through advocacy and the articulation of ethical standards.	Link
Asia Pacific Alliance of Rare Diseases Organisations	The Asia Pacific Alliance of Rare Disease Organisations (APARDO) is a collaborative network aimed at advocating for individuals with rare diseases across the Asia-Pacific region. The organization focuses on improving diagnosis, care, and management of rare diseases by promoting collaboration among patient organizations, healthcare professionals, and policymakers.	Link
Childhood Dementia Initiative	The Childhood Dementia Initiative focuses on raising awareness and advocating for children suffering from dementia, a condition caused by over 145 neurodegenerative disorders. The initiative aims to improve research, care, and quality of life for affected children and their families, emphasizing the need for systemic change and collaborative efforts to address the challenges associated with childhood dementia.	Link
Rare Voices Australia	Rare Voices Australia (RVA) is the national peak body for individuals living with rare diseases in Australia, advocating for policy changes and healthcare systems that meet their needs. The organization works collaboratively with stakeholders, provides resources and support, and leads initiatives like the National Strategic Action Plan for Rare Diseases.	Link
Chinese Organization for Rare Disorders	The Chinese Organization for Rare Disorders aims to promote collaboration among rare disease patients, medical professionals, pharmaceutical companies, and government agencies. They focus on raising awareness, supporting patient organizations, advocating for policy changes, and providing an information platform to enhance understanding and access to resources for those affected by rare diseases in China.	Link
National Organization for Rare Disorders	The National Organization for Rare Disorders (NORD) is a nonprofit that advocates for individuals with rare diseases, providing resources, education, and support to patients and families. NORD also promotes research and public policy initiatives to improve healthcare access and outcomes for those affected by rare conditions.	Link
Eurordis Rare Diseases Europe	EURORDIS is a European nonprofit organization that advocates for individuals with rare diseases, uniting over 1,000 patient organizations across Europe. They focus on empowering patients, promoting research, and influencing policies to improve the quality of life for those affected by rare diseases. EURORDIS also engages in initiatives such as Rare Disease Day and provides resources to enhance awareness and support for patients and their families.	Link
Lysosomal Diseases New Zealand	Lysosomal Diseases New Zealand (LDNZ) is a Facebook community dedicated to raising awareness and supporting individuals affected by lysosomal storage diseases, including Niemann-Pick disease.	Link
The Associacao Niemann Pick & Batten Brasil (ANPB)	The Associação Niemann-Pick & Batten Brasil (ANPB) is a nonprofit organization established in 2010 that provides support to individuals and families affected by Niemann-Pick and Batten diseases in Brazil. The organization focuses on raising awareness, offering resources, and advocating for better treatment and support for those affected by these rare disorders.	Link
Niemann-Pick Type C Japan	Niemann-Pick Japan is a patient advocacy organization dedicated to supporting individuals and families affected by Niemann-Pick disease. The group focuses on raising awareness, providing resources, and advocating for improved treatments and support within the healthcare system	Link
Niemann Pick UK	NPUK (Niemann-Pick UK) is a charity focused on supporting individuals affected by Niemann-Pick diseases through advocacy, awareness, and funding research for treatments. The organization provides care and support resources, hosts community events, and actively participates in campaigns for better treatment options, such as challenging decisions regarding medications.	Link
Ara Parseghian Medical Research Foundation	The Ara Parseghian Medical Research Foundation is a nonprofit organization that funds research to find treatments for Niemann-Pick Type C disease, inspired by the Parseghian family’s personal loss of three grandchildren to the disease.	Link
Dana’s Angels Research Trust	Dana's Angels Research Trust (DART) focuses on funding medical research to find treatments and a cure for Niemann-Pick Type C disease, a rare and fatal genetic disorder affecting children. DART was founded in memory of Dana Marella, who battled NPC, and it continues to raise awareness and support scientific efforts, including drug trials and collaboration with the FDA.	Link
Wylder Nation Foundation	Wylder Nation Foundation is dedicated to improving the lives of children with Lysosomal Storage Diseases, especially focusing on Niemann-Pick Disease Types A and B. They aim to accelerate the discovery of treatments for these rare diseases, which currently have limited medical options.	Link