Snuggle Up for Scleroderma June 29th, 2026 ...
World Scleroderma Day!
Help fund specialist nursing care for Australians living with scleroderma. This winter, something as simple as staying warm can change a life.
What is Snuggle Up?
June is World Scleroderma Awareness Month, and as the colder weather sets in, staying warm and cosy becomes more than just a comfort – it’s essential for many people living with scleroderma.
For those experiencing Raynaud’s phenomenon (a common symptom of scleroderma), the cold can be painful and difficult to manage, often making it hard to get out and take part in regaular activities. That’s why this campaign is all about embracing warmth, staying in, and finding simple ways to connect and give back.
Where your support goes:
Right now, there is no government funding for Scleroderma Nurses in Australia. Other serious conditions have funded nurse programs, but Scleroderma doesn’t. Cities like Canberra and Darwin currently have no Scleroderma Nurses at all. Your support helps close that gap.
Every dollar goes directly to the scleroderma community.
Your donations support:
Become a Monthly Giver
Monthly giving is how we fund scleroderma nurses year-round. But every contribution, whatever the size or frequency, brings us closer to the care this community deserves.
Get the facts
Scleroderma is an autoimmune condition that causes hardening and tightening of the skin and connective tissues. It can impact the lungs, kidneys, digestive system and other organs. Early diagnosis and care from a specialist nurse can drastically improve quality of life.
For more information on how to start your fundraiser and support Scleroderma Australia, click here.
People with rare diseases like scleroderma face unique challenges. They may struggle to get an accurate diagnosis and access to effective treatments, and in the case of scleroderma, people may have never heard of the condition before they’re diagnosed with it.
There’s not as much support out there for people with rare diseases compared to more common conditions. This can leave people with rare diseases feeling helpless, anxious and alone.
Many GPs don’t know much about scleroderma, which can lead to further feelings of isolation and hopelessness. This lack of knowledge can also impede treatment, leading to increased pain and discomfort.
To help combat this lack of knowledge and support, Scleroderma Australia is hoping to raise essential funds dedicated to scleroderma specialist nurses who will help support and advise people living with scleroderma in Australia.
Scleroderma specialist nurses provide information, referrals, and clinical assistance, including wound management and advice on dressings. Specialist wound care skills are a crucial part of the clinical role and include debridement and infection management – a specialism that is increasingly difficult to access in the community.
Our scleroderma specialist nurses are available via phone and video call so people with scleroderma can call for advice and guidance on topics like wound care, diet, vaccination, chronic illness, disability, and navigating Australia’s health system.
Tara’s journey with scleroderma started when she began experiencing sore fingers while playing the clarinet, followed by foot pain. Despite being initially chalked up to post-illness fatigue, her condition didn’t improve, and she was subsequently diagnosed with scleroderma.
Living with scleroderma drastically affected Tara’s life. Simple everyday tasks became a challenge due to pain from standing for more than 10 minutes and contractures in her hand joints. To manage her energy levels, she had to carefully pace her tasks and rest after physically demanding activities.
Sadly, due to ulcerations on her arms, she had to stop working clinically and later teaching, eventually relying on a disability pension. Despite these hardships, Tara found a way to give back through volunteer work with Scleroderma Queensland and Scleroderma Australia.
The unpredictability of each day was the most challenging aspect of living with scleroderma for Tara. The pain and energy levels varied from day to day, and despite losing two fingers to the disease, she often found herself having to justify her disability access. Tara missed playing music, and while she was suggested to try different instruments, she remained steadfast in her identity as a reed player.
As a nurse herself, Tara emphasised the necessity of specialist scleroderma nurses. She felt that while she could navigate the system, many others might struggle. She believed this role could offer valuable support for patients, caregivers, and healthcare providers, providing information, advice, and advocacy about their care.
Want to help raise awareness in your workplace or community?
Download posters, social media graphics, and Zoom backgrounds here: