Scleroderma Canada

Scleroderma Canada We advocate nationally for those affected by scleroderma.

Mailing List: https://lp.constantcontactpages.com/sl/2Ihw5tK/SclerodermaCanada

Ottawa 2026 Conference: https://www.sclerodermaconference.ca/

02/28/2026

Today on Rare Disease Day, we’re talking about something that doesn’t always get the spotlight — policy.
Policy might sound technical or political. But for people living with rare diseases, policy is personal.
It determines:
• How long it takes to get diagnosed
• Whether treatments are covered
• If life-saving medications are affordable
• How quickly new therapies are approved
• Whether patients can access specialists close to home
• How research is funded
For rare diseases like systemic sclerosis, delays and gaps in the system don’t just create inconvenience — they compound disease burden. Diagnostic delays, limited drug access, and inconsistent coverage across provinces are not medical problems alone. They are policy problems.
Good policy means:
✔ Faster diagnoses
✔ Fair and equitable drug access
✔ Investment in research
✔ Support for caregivers
✔ A stronger, more responsive health system
On Rare Disease Day, we honour the strength of our community — and we reaffirm that advocacy matters. Because when policy improves, lives improve.

We'd like to introduce you to Dr. Sindhu Johnson, who will be speaking at the upcoming National Scleroderma Conference. ...
02/19/2026

We'd like to introduce you to Dr. Sindhu Johnson, who will be speaking at the upcoming National Scleroderma Conference. Dr. Johnson is a Rheumatologist and Professor of Medicine at the University of Toronto, and Director of the Toronto Scleroderma Program.

She graduated from medical school at Memorial University of Newfoundland, followed by residencies in Internal Medicine and Rheumatology at the University of Toronto. She completed a PhD in Clinical Epidemiology through the Institute of Health Policy, Management and Evaluation. Her research focuses on observational studies and clinical trials to better understand scleroderma, how it impacts peoples’ lives, develop better treatments and discover a cure. She was a scientist for studies that led to the first two US Food and Drug Administration approved treatments for scleroderma (nintedinib, tocilizumab). She is the Principal Investigator for the American College of Rheumatology and American College of Chest Physicians Guidelines for the screening, monitoring and treatment of interstitial lung disease in people with scleroderma.

Conferences are about more than sessions — they’re about people.We’ll open the conference with an evening of connection ...
02/10/2026

Conferences are about more than sessions — they’re about people.

We’ll open the conference with an evening of connection and recognition at the Canada Aviation and Space Museum during our Opening Night Dinner & Awards Ceremony. This gathering brings our community together to connect, reflect, and recognize the individuals whose leadership, advocacy, and commitment continue to move the scleroderma community forward.

Honouring these contributions matters. Awards help acknowledge impact, encourage continued leadership, and remind us that progress is driven by people — and by the strength of our community.

Link below to buy your tickets to conference
https://www.sclerodermaconference.ca/event-details/22nd-bi-annual-national-scleroderma-conference

“I hold onto hope for a cure in this lifetime.”— Patient Impact Survey respondentThis sentiment, shared through our Pati...
02/06/2026

“I hold onto hope for a cure in this lifetime.”
— Patient Impact Survey respondent

This sentiment, shared through our Patient Impact Survey, reflects how important research is to Canadians living with scleroderma. We hear this clearly and remain committed to supporting Canadian research that advances understanding, improves care, and helps shape the future.

Today we pause together with heavy hearts to remember Maureen Worron-Sauvé, a woman whose presence shaped our community ...
02/04/2026

Today we pause together with heavy hearts to remember Maureen Worron-Sauvé, a woman whose presence shaped our community in ways that words can only begin to describe.

Those who worked alongside Maureen know well that she led by example, by persistence, by refusing to step aside when her presence could make a difference. Because she stayed, people felt less alone. Because she spoke, progress found a voice. Because she listened, others felt seen.

Diagnosed with scleroderma in 2002, Maureen transformed her lived experience into action almost immediately. She joined the Scleroderma Society of Ontario Board of Directors in 2003, eventually serving as Board President from 2007 until 2016. She went on to lead nationally as Board President of Scleroderma Canada from 2010 to 2016, helping guide the organization with clarity, empathy, and resolve. Right up until 2026, she continued to serve as Vice President of Advocacy, never stepping away from the work she believed so deeply in.

Maureen’s impact went far beyond titles. She was a deeply respected patient research partner. Internationally, she was recognized as a leader who helped ensure research was done with patients, not just about them.

What many of us will remember most isn’t only what Maureen accomplished, it’s how she made us feel. She made space. She made room. She reminded us, patients, caregivers, researchers, and advocates alike, that compassion and grit can coexist, and that progress is strongest when it is shared.

Maureen leaves behind a legacy that will endure long after us. She leaves a community more connected, a path forward more clearly marked, and a standard of advocacy rooted in courage, kindness, and unwavering purpose.

We mourn her deeply. We are grateful beyond measure. And we carry her spirit forward in the work she loved and the community she helped build.

With love, respect, and remembrance,

Scleroderma Canada & The Scleroderma Society of Ontario

We encourage you to visit Maureen's memorial page and to share your Maureen story on the memory wall.

https://ow.ly/GuUi50Y91h0

Rare disease. Real people. National impact.This is Scleroderma Canada.
02/03/2026

Rare disease. Real people. National impact.
This is Scleroderma Canada.

Throwing it back to 2016 while looking ahead to 2026. 📸Celebrating how far we’ve come and the work still ahead!
01/20/2026

Throwing it back to 2016 while looking ahead to 2026. 📸Celebrating how far we’ve come and the work still ahead!

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41 King William Street, Suite 203
Hamilton, ON
L8R1A2

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Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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