Cavernous Malformation Canada

Cavernous Malformation Canada Cavernous Malformation Canada-informs, supports and connects Canadians affected by cavernous malformation. About Cavernous Angioma

What’s In a Name?

Cavernous Angioma - Cavernoma - Cavernous Malformation - Cavernous Hemangioma or acronyms like: CCM (Cerebral Cavernous Malformations) and CA (Cavernous Angioma)

These terms are used interchangeably to refer to mulberry-shaped abnormal blood vessels in the brain or spine. Angioma Alliance Canada is an organization for and by individuals who have these abnormal blood vessels and those who care abo

ut them. There is a great deal of information to learn about living with cavernous angiomas. Here you will find information about symptoms and treatment, surgery, rehabilitation, genetics, diagnostic testing, pregnancy, and pediatric cavernous angiomas. If you have questions about this information, feel free to write info@angioma.ca, or ask your question on the Community Forum or connect with a Peer Support volunteer. Content graciously provided by Angioma Alliance USA

Ne baissez jamais la tête. Gardez-la haute. Regardez le monde droit dans les yeux.~Helen Keller
07/16/2025

Ne baissez jamais la tête. Gardez-la haute. Regardez le monde droit dans les yeux.
~Helen Keller

We are so grateful to Sophie for selecting Cavernous Malformation Canada as the forum to launch her book! A story of co...
07/10/2025

We are so grateful to Sophie for selecting Cavernous Malformation Canada as the forum to launch her book!
A story of courage and determination, her book inspires hope for those with cavernous malformation, other rare diseases and personal health challenges of any kind.

Sophie's book is available in our shop. https://www.cavernousmalformation.ca/shop
All proceeds support Cavernous Malformation Canada.

If you missed the incredibly informative webinar held by Dr. Atif Zafar, vascular neurologist and Chair of the Cavernous...
07/04/2025

If you missed the incredibly informative webinar held by Dr. Atif Zafar, vascular neurologist and Chair of the Cavernous Malformation Canada Scientific and Clinical Advisory Board, it is now available for viewing! He answers some great questions from our patient and family community. Access the link https://youtu.be/G5gAAhkd-TY

We are humbly proud to be the patient advocacy organization representing all in Canada impacted by cavernous malformatio...
07/01/2025

We are humbly proud to be the patient advocacy organization representing all in Canada impacted by cavernous malformation; expanding and supporting Canadian cavernous malformation research; educating and connecting clinicians in Canada, united towards a cure and a better quality of life for those affected. Today we celebrate the essence of our diverse community and the strength of our country, Happy Canada Day!

One of the most powerful ways to spread awareness of cavernous malformation is through meeting with those in our family,...
06/30/2025

One of the most powerful ways to spread awareness of cavernous malformation is through meeting with those in our family, friends, colleagues, neighbours and asking them to listen. Thank you Christian for gathering facts from www.cavernousmalformation.ca/fastfacts and sharing your personal experience with CM to bring awareness, understanding and factual information to people.

If you would like to be an Awareness Ambassador like Christian, visit the link for some facts and bring it with you to an informal chat with someone in your circle.

To read more about Christian's story with CM, visit https://www.cavernousmalformation.ca/christian-s-story

06/26/2025

Sophie’s Story of Strength, in Her Own Words.
Listen as Sophie courageously takes us through the long road of living life with cavernous malformation and doing her best to survive each day to now thriving.

Read Sophie’s Full Story at https://www.cavernousmalformation.ca/patient-stories

To learn more about our Care Navigation Program that supported Sophie, or to share your story email us at supportnetwork@cavernousmalformation.ca

Thank you to Sophie for sharing her inspiring story simply to help others know they are not alone and to raise awareness of cavernous malformation.

For more information about cavernous malformation visit us at www.cavernousmalformation.ca

Vancouver illuminates awareness of cavernous malformation on June 22 and 23!Historic and meaningful landmarks will light...
06/20/2025

Vancouver illuminates awareness of cavernous malformation on June 22 and 23!

Historic and meaningful landmarks will light in combinations of red and red/white for Cavernous Malformation Awareness Month. As a rare disease, patients and families face unique challenges in their care. With no cure and limited treatment options, these iconic symbols of hope, remind us that we are unified towards action, support and awareness.

On June 22 at dusk will illuminate the sails of light, the City of Vancouver - Local Government shines brightly via the Burrard Street bridge and City Hall, and Vancouver Convention Centre casts a red glow including the Olympic Cauldron. On June 23, Science World highlights awareness by glowing the dome in red.

Join us at our event on June 22 from 730-930 as we connect and watch the harbour light up to recognize cavernous malformation and remind us, we are not alone.

British Columbia has proclaimed June as Cavernous Malformation Awareness Month and this has a incredible impact on all.

Other lighting events this week:

June 24
Nanaimo Bastion
Fred A Lundy Bridge, Newmarket

June 25
Reconciliation Bridge, Calgary

June 26
Shaw Building, Charlottetown

June 27
Confederation Building, St. John's
City Hall, Moose Jaw

June 28
Kingston City Hall and Springer Market

June 29
Mississauga Clock Tower
City Hall and Prairie Wind Monument
Saskatoon, SK

06/18/2025

Unraveling Rare-Week 2!

On June 18, our home city is illuminating for Cavernous Malformation Awareness Month!High Level BridgeAlberta Legislatur...
06/17/2025

On June 18, our home city is illuminating for Cavernous Malformation Awareness Month!

High Level Bridge
Alberta Legislature Building
Fairmont MacDonald Hotel

Will light the city in red and red, white and gray. Alberta has declared June as Cavernous Malformation Awareness Month!

As a rare disease, patients and families experience barriers and challenges that impact their care and quality of life. Lighting landmarks brings a sense of community, recognition and momentum towards a cure for cavernous malformation and curiosity from people to learn, get involved and we hope, understand.

Join us at our Edmonton Community Meet Up June 18 at 8:45pm to share, connect and watch our capital city ignite awareness, reminding us, we are not alone.

Other lighting taking place this week:

June 20 RBC Centre Winnipeg
June 21 Vaughn City Hall

view more at www.cavernousmalformation.ca/event

Thank you to the Province of British Columbia for proclaiming June 2025 as Cavernous Malformation Awareness Month!!Recog...
06/16/2025

Thank you to the Province of British Columbia for proclaiming June 2025 as Cavernous Malformation Awareness Month!!

Recognition of the need for a cure and treatment options as well as, early access to diagnosis brings critical awareness the public, researchers and clinicians about this rare disease.

So importantly, it offers to our patient and family community, a time of understanding, hope and an opportunity to feel seen and valued, as they navigation this often invisible disease.

To read the Proclamation see the link https://www.bclaws.gov.bc.ca/civix/document/id/proclamations/proclamations/CavernousMalformationAwrnsMth2025

The iconic landmarks Niagara Falls and Peace Bridge, are illuminating hope on June 14 for Cavernous Malformation Awarene...
06/12/2025

The iconic landmarks Niagara Falls and Peace Bridge, are illuminating hope on June 14 for Cavernous Malformation Awareness Month!

The Canadian Horseshoe Falls will shine white, red, red, white and the American Falls will light red, white, white red at 10:00pm ET for 15 minutes! Don't miss it!

View this live cam to see it in real time!

https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str

The Peace Bridge, which unites Canada and the US, will illuminate in red starting at dusk.

For more information about cavernous malformation visit www.cavernousmalformation.ca



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