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Canadian Fabry Association

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Canada
Trois-Rivières, QC
Canadian Fabry Association

A platform for the Fabry Community to be inspired, educated, and to share a common goal to Live Well. Get connected for the latest updates and programs!

09/04/2026

🎉 OUR BOOK IS FINALLY HERE! 📘✨

We are beyond thrilled to share a very special project with you! "Andy's ABC Adventure: Learning About Fabry" is officially available now!

This isn't just any book—it’s created by the Fabry community, for the Fabry community. Follow Andy the Tiger from A to Z as he learns to navigate life with Fabry disease! Bringing real patient, family, and caregiver experiences to life, this story breaks down medical concepts into accessible ideas while focusing on emotional strength, resilience, and reminding readers of all ages that no one faces this journey alone. 🐅💙

💙 Why your copy matters:

• 100% of proceeds go directly to the Canadian Fabry Association to support families and individuals living with Fabry.

• It’s a wonderful tool to explore, empower, and learn together while spreading awareness!

🛒 How to get yours:

1 Click the link: https://www.amazon.ca/dp/B0HH95MZGW

2 Or simply search "Fabry" on Amazon—it’ll pop right up! ($17.99 CAD)

Grab your copy today, share with family and friends, and help us make a difference! 🌟📚

09/01/2026

FabryCast Episode 12 guest Linda Quaranta sent us this photo rocking her BE RARE. BE YOU. sweater!

Linda joined us for an incredible conversation about intentional living, resilience, and navigating life with Fabry.

🎧 Haven’t heard her episode yet? Go give Episode 12 a listen!

09/01/2026

We’re excited to introduce the newest member of the Canadian Fabry Association Board of Directors, Matt Pascuzzo.

Matt brings an incredible combination of experience in law, communications, leadership, governance and community service, and just as importantly, he brings empathy, a strong and thoughtful voice, and a genuine drive to create positive change.

A natural advocate, Matt believes in making a meaningful difference, and we know his perspective, leadership and passion will be a wonderful addition to our Board as CFA continues to grow, strengthen our community, and advocate for those impacted by Fabry disease across Canada.

We feel incredibly fortunate to have Matt around our board table.

08/19/2026

Fabry disease can come with out-of-pocket costs that many people never see.

Travel. Parking. Hotels. Lost income. Caregiving responsibilities. Medical supplies. Copays and deductibles.

If you are living with Fabry disease or caring for someone who is, we invite you to participate in a confidential Canadian survey documenting these financial realities.

✅ Anonymous & confidential
✅ 10–15 minutes
✅ Open to Canadians affected by Fabry disease

https://survey.alchemer-ca.com/s3/50616616/78ec0db3d7c9

La maladie de Fabry peut entraîner des dépenses à votre charge que beaucoup de gens ne voient pas.

Déplacements. Stationnement. Hébergement. Perte de revenu. Responsabilité d’un proche aidant. Fournitures médicales. Quotes-parts et franchises.

Si vous vivez avec la maladie de Fabry ou prenez soin d’une personne qui en est atteinte, nous vous invitons à participer à un sondage canadien confidentiel visant à documenter ces réalités financières.

✅ Anonyme et confidentiel
✅ Cela vous prendra de 10 à 15 minutes
✅ Ouvert aux Canadiens touchés par la maladie de Fabry

Participez au sondage : https://survey.alchemer-ca.com/s3/50616616/78ec0db3d7c9

CommunautéMaladiesRares

07/28/2026

Our Summer Issue of Fabry Aware is here.

Every edition is a reflection of what our community can accomplish when we come together.

Inside this issue, you’ll find highlights from our Quebec Patient Empowerment and Youth Meetings, key takeaways from the Fabry International Network (FIN) Expert Meeting, new resources for young adults living with Fabry disease, updates on our sold-out Women’s Retreat, our CFA Resilience Program, advocacy initiatives, community news, and much more.

06/30/2026

Registration is now full, and we are grateful for the strong interest in this event.

You are welcome to join the waitlist. Should a spot become available, we will contact individuals on the waitlist directly.

06/16/2026

It was inspiring to come together with organizations from around the world to learn, collaborate, and share how we can continue to grow as a global Fabry community.

A sincere thank you to FIN for hosting such an outstanding meeting and for creating the opportunity for meaningful connection, knowledge exchange, and collaboration. Gatherings like this strengthen our collective ability to support, educate, and empower individuals and families affected by Fabry disease.

GlobalCommunity

06/12/2026

The Canadian Fabry Association is excited to announce that registration is now open for Rare. Connected. Understood., a Fabry Women’s Retreat taking place in Prince Edward Island from September 25–27, 2026.

Join us for a weekend designed to create space for women affected by Fabry disease to learn, reflect, and connect in a setting where their experiences are recognized and valued.

Through expert-led education, patient-language summaries, wellness activities, and community-building moments, this weekend will offer practical tools, meaningful conversations, and a sense of belonging that extends beyond the event itself.

Register here: https://fabrywomensretreat2026.eventbrite.ca

A weekend to feel seen, supported, and deeply connected. Community is medicine.

06/10/2026

Quebec Patient Empowerment Meeting. This group walked in with questions and passion, and they walked out with answers, education, confidence, and a stronger voice.

06/10/2026

Want to help bring the Fabry community’s story to life? The CFA is excited to be partnering with Bayley Publishing on a special community book project that will help raise awareness, educate others, and support future fundraising for the CFA. No writing or publishing experience is needed. The process will be guided step-by-step, and the time commitment is expected to be about 30 minutes per week.

Our first two meetings will take place on:

📅 Monday, June 15
🕖 7:00 PM EST

📅 Monday, June 29
🕖 7:00 PM EST

We are aiming for approximately six meetings in total. Register here:
https://us02web.zoom.us/meeting/register/sneEYGzIQcaNJSOuS-lneQ

We would love to have you join us. 💙

Adresse

Trois-Rivières, QC

Site Web

http://www.fabrycanada.com/

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