Every journey with scleroderma is unique, but one thing unites us all—hope. Faces of Hope shares the real stories of resilience, strength, and courage from members of the Scleroderma Association of BC. These personal testimonies shine a light on the challenges and triumphs of living with scleroderma, inspiring connection and understanding.

Read Rosanne’s story and discover more voices of hope here

People living with scleroderma face unique challenges. For some, those challenges include developing pulmonary arterial hypertension (PAH)—a progressive and life-threatening condition. Timely diagnosis and access to new treatments can make all the difference, but too often, patients face delays that can cost them their health and quality of life.

In August 2024, Health Canada approved sotatercept (Winrevair), a breakthrough treatment that offers hope to PAH patients, including those in our scleroderma community. Canada’s Drug Agency has now recommended that sotatercept be publicly funded. For this treatment to become accessible to patients, the pan-Canadian Pharmaceutical Alliance (pCPA) must negotiate pricing and funding with the manufacturer on behalf of the provincial drug programs.

That’s why we’re proud to support PHA Canada’s Time Matters PAH campaign—an advocacy initiative pushing for timely access to sotatercept, a breakthrough treatment that offers hope to PAH patients, including those in our scleroderma community.

Here’s how you can help—and it’s simple:
✅ Take 2 minutes to send a pre-written letter to your provincial health minister.
✅ Share this with your family and friends to amplify your impact.

Every voice matters.

By speaking up, you are helping pulmonary arterial hypertension (PAH) patients access this new treatment.

Take action now ➡️ www.phacanada.ca/advocate

Together, we can ensure timely access to life-changing treatment for PAH patients in Canada.

The Scleroderma Association of B.C.

As SABC celebrates its 40th anniversary, our commitment to supporting the community remains stronger than ever. To ensure we continue this important work for years to come, we are seeking dedicated community representatives and new board members to join us in October 2025. This is especially important as a few of our valued members will be stepping down in October 2026. We invite passionate individuals who share our vision to step forward and help us shape a brighter future together.

Our Mission
Our mission is threefold and drives everything we do each year:

• Patient Support: promoting patient outreach and education.
• Raise Awareness: Developing information tools and educating the general public and the medical community about scleroderma. 
• Research Engagement: support cutting-edge research in British Columbia and Canada.

What We Do

Our activities and responsibilities include:

• Monthly Board Meetings: we host monthly board meetings, usually on Sundays from 10:00 AM to 12:00 PM to discuss updates and brainstorm creative ways to expand our outreach.
• Monthly Meetings: Held on Zoom, usually on Sundays from 10:00 am to 12:00 pm.
• June Events/ Scleroderma Awareness Month: During June, we host events to fundraise for scleroderma research, including social events and a walk/run/bike around the seawall of Stanley Park.
• Bulletin Magazine: We draft, edit and publish an annual Bulletin Magazine to provide updates on the latest events and communications from patients, board members, and medical professionals.
• Sclerodata Newsletter: Sent annually to patients via email and mail.
• Annual General Meeting & Conference: Held in October, our AGM educates patients about the latest scleroderma research with presentations on basic science, clinical research, lifestyle, and psychosocial research.
• Patient Support Line: We answer questions from patients, caregivers, and individuals interested in volunteering or donating via email or phone
• Advocacy: Spreading awareness and educating medical professionals and the general public about chronic illness and the challenges of scleroderma

Where We Need Help

• Social Media: Assistance in managing and growing our social media presence.
• Fundraising Ideas: Innovative thinkers to develop novel fundraising ideas.
• Website and Canada Helps: Individuals with computer science backgrounds to help update our website and Canada Helps platform.
• Research Fund Allocation: Help in reviewing and deciding where research funds should be allocated.
• Content Development: Writers and editors to develop content for the magazine and Sclerodata newsletter.
• Clinical and Basic Science Research: Support for evidence-based clinical and basic science research to expedite clinical trials and therapeutics for scleroderma.
• Advocacy: Spreading awareness and educating medical professionals and the general public about chronic illness to expedite research & therapeutics.

Who You Are

We are seeking individuals who:

• Are passionate about making a difference in the lives of those affected by scleroderma.
• Possess skills or experience in areas such as social media, fundraising, content creation, or advocacy.
• Are willing to commit a few hours a month to volunteer efforts.
• Enjoy working collaboratively within a team.
• You have a personal connection to scleroderma, or simply a strong desire to support our mission.

You do not need to have scleroderma, but you must be committed to helping us continue our mission. Whether you are a friend, family member, or someone with a few hours a month to spare, your contribution can make a significant difference.

Our Teams

You won’t be working alone! Our teams include:

• Financial
• Communication
• Support
• Research
• Events
• Fundraising
• Advocacy

We are a dedicated and fun group of people, each bringing unique skills and passions to make a difference. Volunteering for this community is incredibly rewarding, which is why many of our members have been on the board for years and why we have thrived for the past 40 years.

Apply Now

Join us and be a part of something meaningful!

Phone:          1-604-371-1005

E-Mail:           info@sclerodermabc.ca