Scleroderma Victoria

Scleroderma Victoria Scleroderma Victoria supports people with scleroderma, their families, carers and friends; promotes community awareness and supports research.

Let’s Snuggle Up for a cause this winter 💛June marks the start of winter in Australia, and for people living with sclero...
01/06/2026

Let’s Snuggle Up for a cause this winter 💛

June marks the start of winter in Australia, and for people living with scleroderma, staying warm becomes even more important!

Cold weather can greatly impact comfort, circulation, and daily life.

That’s why June is our Snuggle Up for Scleroderma month - raising awareness and vital funds to support dedicated scleroderma specialist nurses.

Now is the PERFECT time to plan your winter fundraiser:

🛌 PJ Party - cosy up in your favourite pyjamas
🎬 Movie Night - blankets, snacks, and your favourite films
🧣 Scarves & Scones - host a warm winter afternoon tea
👕 Comfy for a Cause - swap office wear for comfy clothes

Let’s get ready to snuggle up for a cause and mark 29th June, World Scleroderma Day, in your calendar 🌻



29/05/2026

Winter’s right around the corner!
What’s your must-have for staying warm and cosy? 🧣🧤

29/05/2026

MARK YOUR CALENDARS for our June in-person and online support group meetings!

Whether you’re newly diagnosed, a carer, or have been part of the community for years, you’ll find connection, understanding, and support from people who truly get it.

New attendees are always welcome!🌻

For more details, visit our website!

Becoming a financial member of Scleroderma Victoria is one of the most meaningful ways you can support our community 💛We...
27/05/2026

Becoming a financial member of Scleroderma Victoria is one of the most meaningful ways you can support our community 💛

We’re proudly volunteer-led and rely on the support of our financial members to keep our vital work going. Your membership helps strengthen advocacy, secure funding, support our programs, and keep our support groups running.

It’s more than a membership - it’s an investment in hope, connection, and a better future for everyone affected by scleroderma.

👉Become a member today and help us continue making a difference.

JOIN US for our June Virtual Education Session with guest speaker Dr Charmaine Jones!WHEN: Saturday, 13 June at 10:30 AM...
26/05/2026

JOIN US for our June Virtual Education Session with guest speaker Dr Charmaine Jones!

WHEN: Saturday, 13 June at 10:30 AM AEST
WHERE: Online via Google Meet
COST: It's FREE!
TOPIC: Scleroderma: My Pain Assessment Communication

In this session, Dr Charmaine Jones will:
✔️ Explore why traditional 1–10 pain scales often fail to reflect the lived reality of chronic pain
✔️ Introduce the My Pain Assessment Communication Tool (MPaCT), a patient-led innovation transforming pain communication
✔️ Share how MPaCT helps people communicate the real impact of pain on daily life, work, sleep, mood, and relationships
✔️ Explain how the tool can support clearer conversations and better shared decision-making with healthcare providers
✔️ Answer your questions live

Dr Charmaine Jones is a retired palliative medicine physician, patient advocate, and co-developer of MPaCT. She is a Director of Dragon Claw (now trading as My Flare Up) and has dedicated decades to improving the lives of people living with autoimmune inflammatory diseases and chronic pain through patient-centred care and advocacy.

Register today! Link in the comments.

22/05/2026

🌻 What keeps you hopeful on the hardest days?

22/05/2026

Got your hoodie ready? 💛

As the cooler weather starts to roll in and Scleroderma Awareness Month approaches, there’s no better time to cosy up with purpose.

World Scleroderma Day hoodies are more than just warm and comfy - they’re a way to show your support, spark conversations, and stand with the scleroderma community.

Every hoodie helps us continue supporting the scleroderma community, raising awareness, and advocating for better care and understanding.

Check out World Scleroderma Day hoodies today! Link in the comments.

Ever had your fingers or toes suddenly turn white, blue, then red when it’s cold? That’s not just “bad circulation” - it...
21/05/2026

Ever had your fingers or toes suddenly turn white, blue, then red when it’s cold? That’s not just “bad circulation” - it could be Raynaud’s Phenomenon!

Raynaud’s happens when the small blood vessels in your hands, feet (and sometimes nose or ears) overreact to the cold or even stress, temporarily cutting off blood flow.

There are two types:
1. Primary Raynaud’s - more common and usually mild.
2. Secondary Raynaud’s - linked to autoimmune conditions like Scleroderma, Lupus or Rheumatoid Arthritis, and often more serious.

Swipe through to learn:
👉What is Raynaud’s Phenomenon?
👉 What actually happens during a Raynaud’s attack
👉 The common symptoms and triggers
👉 Tips for managing mild cases and severe cases

It's important to seek medical advice if you have any concerns regarding Raynaud’s. Early treatment may lead to better outcomes.

IMPORTANT UPDATE: The Gene Swinstead Memorial Luncheon is now on 28 June.Join us for a heartfelt afternoon as we come to...
19/05/2026

IMPORTANT UPDATE: The Gene Swinstead Memorial Luncheon is now on 28 June.

Join us for a heartfelt afternoon as we come together to remember our dear friend and former President, Gene Swinstead.

Our annual World Scleroderma Day Luncheon now proudly carries Gene’s name - a tribute to someone who was at the heart of this special event. Gene loved bringing people together to connect, reflect, and support the scleroderma community, and we’re honoured to continue that legacy.

🗓 Gene Swinstead Memorial Luncheon
🕦 Sunday, 28 June 2026 | Event begins at 11:30am
🍽 Midday sit-down lunch with a delicious two-course meal
🍷 Beer and wine included
🎟 $90 per person (all inclusive)

It’s more than just a lunch - it’s a chance to honour Gene, connect with community, and help raise vital funds and awareness for Scleroderma Victoria.

Come along for a meaningful afternoon of remembrance, community and impact.💛

Get your tickets today! Link in comments.

15/05/2026

💬 If you could tell the world one thing about scleroderma, what would it be?

Address

41 Victoria Parade
Fitzroy, VIC
3065

Telephone

+61392313651

Website

https://www.mycause.com.au/events/snuggleupforscleroderma, https://sclerodermav

Alerts

Be the first to know and let us send you an email when Scleroderma Victoria posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Scleroderma Victoria:

Shortcuts

Share

Category