News & Events

Survey Opportunity for Canadian newly diagnosed AL Patients (<2 years diagnosed)

CASN has been contacted by Evolve-Fieldwork LTD, and QualityMetric INC, LLC which are launching a patient research study on AL Amyloidosis in Canada, sponsored by Prothena Biosciences LTD.

CASN has reviewed the opportunity, and is pleased to provide this invitation to our AL members (or anyone newly diagnosed within 2 years who resides in Canada). Please feel free to share this opportunity with your appropriate contacts who may be interested. Remuneration is provided. 

Access the enrollment information here

Should you have any questions or concerns, please feel free to contact the CASN Board Secretary, Mr. Keith Dares at casn.secretary@gmail.com or Ms. Nadine Koekemoer at nadine.koekemoer@evolve-fieldwork.com

World Heart Federation: Shining a Light On Rare Cardiovascular Diseases

Cardiovascular disease (CVD) is the leading cause of death worldwide, affecting millions of people every year. While many people are familiar with common CVDs such as coronary artery disease, heart failure and arrhythmias, there are many cardiovascular diseases that are less common and therefore less well-known.

Rare cardiovascular diseases can have a significant impact on an individual’s quality of life, and while individually uncommon, these diseases collectively pose a significant burden on health systems, presenting common challenges that would benefit from coordinated and unified action.

To address these common challenges, the World Heart Federation convened a Rare Cardiovascular Diseases Forum in May 2023, ahead of the World Heart Summit. Cardiac Amyloidosis was selected as one of the four rare cardiovascular diseases to be presented at the forum; Keith Dares from Nova Scotia participated in the forum, sharing his patient experience living with Cardiac Amyloidosis. 

Click here to read the full press release: Shining a light on rare cardiovascular diseases – World Heart Federation (world-heart-federation.org)

To read Keith’s summary of the forum, click here. The WHF forum in Switzerland – Amyloidosis Alliance

Amyloidosis Support Groups October 27-29, 2023 (Chicago, Il)

ATTR-Wild Type and Hereditary Amyloidosis Support Group Meeting October 27-29, 2023 

“The ASG has been holding this biennial support meeting since 2009. We expect more than 400 patients and caregivers. We will have amyloidosis researchers and clinicians (“amyloidologists”) along with clinical trial liaisons. We have added a “Meet & Greet” to the Friday Night preceding the event.”

ATTR-Wild Type and Hereditary Amyloidosis Support Group Meeting October 27-29, 2 (constantcontact.com)

4TH International ATTR Amyloidosis Meeting for Patients and Doctors November 2-3, 2023 (Madrid, Spain)

“The 4th congress dedicated to amyloidosis ATTR physicians patients, is the opportunity to meet face-to-face in Madrid on November 02 and 03, 2023. It’s a unique opportunity to connect with the amyloidosis community. Learn more about ATTR amyloidosis, an evolving environment in terms of diagnosis, management and treatment.”

Patients can register for free online access to the patient sessions: please see registration details and detailed program information at attramyloidosis2023.com