Desmoid Tumour Foundation of Canada-DFC

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Desmoid Tumour Foundation of Canada-DFC

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The Desmoid Tumour Foundation of Canada-DFC is dedicated to funding research for a cure

10/10/2026

Notre sondage est maintenant disponible en français !

Vous vivez avec une tumeur desmoïde ou vous accompagnez une personne qui en est atteinte ? Nous vous invitons à partager votre expérience.

Vos réponses nous aideront à mieux comprendre les répercussions des tumeurs desmoïdes au quotidien, l’accès aux soins et les expériences de traitement. Elles pourront également contribuer à faire entendre la voix des patients lors de l’évaluation des traitements au Canada.

🗓️ Vous avez jusqu’au 24 octobre pour participer.
🔗 Le lien vers le sondage est dans notre bio.

Merci de votre participation ! Partagez cette publication pour nous aider à joindre davantage de patients et de proches aidants. 💙

09/29/2026

The Desmoid Tumour Foundation of Canada is seeking to better understand the experiences of people living with desmoid tumours and those who care for them. Through this survey, we hope to learn more about the impact of desmoid tumours on daily life, physical and emotional well-being, work and family activities, access to care, and experiences with available treatments.

Your responses may help inform future patient submissions to Canadian health technology assessment (HTA) organizations, including the Canada’s Drug Agency (CDA-AMC) and, where appropriate, INESSS. These organizations review evidence on new and existing treatments and make recommendations that may influence reimbursement and access decisions across Canada. According to the CDA-AMC, patient input is an important part of this review process and helps ensure that the experiences, priorities, and needs of patients and caregivers are considered alongside clinical and economic evidence.

Link in bio

09/27/2026

What an incredible weekend at Together We Will!

For patients and caregivers living with desmoid disease, this weekend is so much more than an educational conference. It’s a chance to hear from experts, learn about the latest research and treatment options, ask questions, and connect with people who truly understand the journey.

We were also grateful to learn more about The Desmoid Project and the incredible work of founders Dana Lawson and Ashley Williams. Together, they are creating strength through connection within our community and across the systems that shape desmoid care—helping ensure that everyone affected by desmoid tumors can access mental health support, community and advocacy, no matter where they live or what resources they have.

If you haven’t checked out The Desmoid Project, we encourage you to learn more:
🌐 desmoidproject.org

And if you’re a patient or caregiver, start planning now for Together We Will next year. Make the trip if you can. The information, connections and sense of community are invaluable.

We are incredibly grateful to DTRF, The Desmoid Project, the clinicians, researchers,advocates and everyone working to support the desmoid community.

🩵 Together, we will.

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09/02/2026

Did you know it’s Desmoid Tumor Awareness Month? Desmoid tumors are rare, and often, the stories behind them are just as complex as the diagnosis itself.

This month, we’re highlighting Living in the In-Between by Emma Rimmer — a powerful memoir that offers an honest, unfiltered look at life with a desmoid tumor: the chronic pain, the uncertainty, and the resilience it takes to keep moving forward.

If you’re looking to better understand the lived experience of desmoid tumor patients, or if you need a reminder that you’re not alone in this journey, we highly recommend picking up this book. Stories like Emma’s help build awareness, connection, and understanding within our community.

Let’s keep the conversation going this month. 🩵 ”

09/01/2026

September is Desmoid Tumour Awareness Month—a time to raise awareness, share information, and recognize the patients, caregivers, families, and healthcare professionals affected by desmoid tumours.

Desmoid tumours are rare, non-metastatic tumours that can be locally aggressive and may cause significant physical and emotional challenges. Because they are uncommon, many people have never heard of them, and patients may face delays in diagnosis, limited treatment options, and feelings of isolation.

Throughout September, the Desmoid Tumour Foundation of Canada is helping make the invisible visible. By sharing information and personal experiences, we can build understanding, strengthen support, and remind those affected that they are not alone.

Whether you are living with a desmoid tumour, caring for someone who is, supporting a loved one, or simply learning more, your voice and your support matter.

Join us this month as we raise awareness, connect our community, and work toward better support, improved care, and continued research.

Share this post to help spread awareness.

08/16/2026

💙 RUN FOR RARE 💙

Today didn’t go quite as planned. The smoke meant the run had to be shortened, but this amazing group still showed up and kept going! 👏

Maddy has put so much heart into making Run for Rare happen, and she has already raised over $3,500 for the Desmoid Tumour Foundation of Canada!

The donation link is still open if you’d like to support her and this incredible cause. Every dollar helps fund the fight against desmoid tumours. 💙

Thank you to everyone who showed up today! 🏃‍♀️

Link in bio

08/13/2026

80 KM FOR RARE 💜

Maddy is taking on an incredible 80 km run to raise money for the Desmoid Tumour Foundation of Canada.

80 km is no small feat — but she’s doing it to make a difference for people living with a rare disease and to help fund research toward better treatments.

We are so grateful for people like Maddy who are willing to go the extra mile… literally. 🏃‍♀️💜

Go Maddy! Thank you for running for rare!

04/02/2026

From grassroots to global impact 💛

Since 2017, the Desmoid Tumour Foundation of Canada has proudly funded $595,638 CAD in research — with a total commitment of $727,518 CAD toward advancing the understanding and treatment of desmoid tumours.

This work has supported leading researchers and institutions around the world — from Canada to the U.S., Europe, and beyond — all working toward better outcomes for patients living with this rare disease.

From early-stage tumor biology…
To breakthrough treatment pathways…
To cutting-edge AI models predicting disease progression…

Every dollar raised is pushing the science forward.

And this only happens because of YOU — our community, our supporters, our fundraisers, and everyone who continues to show up, share, and believe in what’s possible.

We’re not done yet.

💛 More research
💛 More answers
💛 More hope

03/18/2026

We’re growing — and we need the right people beside us.

The Desmoid Tumour Foundation of Canada is looking for 2 passionate individuals to join our Board of Directors.

If you care about making a real impact in the rare disease community and want to help guide meaningful work — we’d love to hear from you.

🧠 Focus areas:
• Governance
• Finance

This is a chance to help shape the future of our foundation and the work we do across Canada.

📩 Interested? Send us a message or email to connect.

Let’s build something strong together 🇨🇦

MakeAnImpact

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Chicago, IL

Website

https://desmoidcanada.com/, https://forms.gle/iqGAy3advoCKMrAk6

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