Canadian Fabry Association

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. 💙

05/29/2026

There is so much courage in showing up. In being vulnerable. In asking questions. In realizing you are not alone.

To every young person and young adult who joined us in Quebec, thank you for bringing your honesty, strength, and heart into the room. This community is better because of you. &youngadults

05/26/2026

Our Quebec Patient Empowerment Meeting was a beautiful success. Together, we shared meaningful Fabry disease education, explored current and emerging treatments, discussed nutrition and mental health, and most importantly, strengthened the sense of community that is so essential for patients and families living with Fabry disease.

A heartfelt thank you to everyone who attended, shared, listened, asked questions, and helped create such a warm and supportive space. These gatherings remind us that education is powerful, connection is healing, and no one in this community has to walk this journey alone.

05/07/2026

CFA Resilience Program
* 5 sessions covered by CFA
* * Canadian patients & care-partners

Many of you have already had the opportunity to meet Sam during our Patient Empowerment Meetings across Canada. His willingness to travel, connect in person, and listen deeply has made a meaningful impact. He has become a genuine source of support and light for so many in our community.

Sam brings not only professional expertise, but also a grounded, empathetic presence that resonates with individuals and families navigating the complexities of Fabry disease.

We’re proud to be able to share this opportunity for continued support to both patients and caregivers. Offered both in person (Ontario GTA) or over Zoom. 

Get in touch with Sam by the contact information provided in the poster. He is honoured to walk alongside you in this journey.

05/07/2026

“Begin with the future in mind.” - Jerry Walter.
Listen to our latest episode of the FabryCast.

Hi everyone,

I had the pleasure of speaking with Julia Alton, the Executive Director of the Canadian Fabry Association, as a guest for a FabryCast podcast.

Julia is a wonderful, talented podcast host, Fabry champion, and friend!

The FabryCast link to my episode is: https://creators.spotify.com/pod/profile/canadianfabryassociation/episodes/Jerry-Walters-Life-with-Fabry-Resilience-in-Action-e3igqs0

I hope that our discussion is helpful to others in some way.

Thank you so much, Julia Alton.

As a community, we still experience hardships, tragedy, and premature loss, but overall, the prognosis for people with Fabry disease seems brighter.

Best wishes, everyone! Jerry Walter

05/02/2026

April is Fabry Disease Awareness Month. As Executive Director of the Canadian Fabry Association and as someone living with Fabry disease, I see firsthand that this journey is more than physical.

It’s emotional. It’s mental. And it’s shared by families and caregivers every day.

That’s why initiatives like Chiesi Canada’s Meditation Challenge (April 29 – May 29) matter.

🧠 Turning minutes into meaning:
Every minute spent meditating helps raise funds for the Canadian Fabry Association, directly supporting mental health programs for our community. We invite you to support the cause and help amplify the impact:

👉 https://lnkd.in/emRenZFB

Together, we can turn awareness into action and mindfulness into meaningful change.

03/25/2026

The CFA is excited to share that registration is now open for the Patient Empowerment Meeting (PEM) taking place in Beaupré, QC on May 23, 2026.

This meeting is open to all patients and families living in Quebec. Looking forward to spending the day together. Link to register:

https://www.eventbrite.ca/e/fabry-patient-empowerment-meeting-in-beaupre-quebec-may-23-2026-tickets-1985212286389?aff=oddtdtcreator