Canadian Organization for Rare Disorders (CORD)

The Canadian Organization for Rare Disorders (CORD) is a Canadian registered charity dedicated to enhancing the lives of individuals and families affected by rare disorders. It functions as a national network of organizations representing those with rare diseases, providing a strong common voice to advocate for a healthcare system and health policy that effectively supports this community[3][4].

Purpose and Activities

CORD's primary focus is on promoting research, diagnosis, treatment, and services for rare disorders in Canada. It works collaboratively with governments, researchers, clinicians, and industry partners to achieve these objectives[2][4]. Key initiatives include:

• Advocacy for Health Policy: CORD plays a crucial role in advocating for policies that benefit individuals with rare disorders, ensuring that their needs are considered in the development of healthcare policies[3][4].
• Newborn Screening: CORD is committed to promoting state-of-the-art newborn screening across all provinces and territories to facilitate early detection of rare conditions[3][4].
• Clinical Trials Registry: The organization works to ensure that Canada's Clinical Trials Registry is effective for those with rare disorders, enabling better access to clinical trials[4].
• Genetic Screening and Counseling: CORD aims to increase access to genetic screening and genetic counseling for individuals with rare disorders, enhancing their ability to manage and understand their conditions[3][4].

Leadership

As of the last available information, Durhane Wong-Rieger serves as the President of CORD, leading the organization's advocacy efforts[3].

Registration and Status

CORD is a registered charity with a business registration number of 896513355RR0001, highlighting its formal status as a nonprofit organization in Canada.

Commemorating Rare Disease Day

CORD actively participates in Rare Disease Day, an international event held annually on February 28, to raise awareness among the general public and decision-makers about the impact of rare diseases on patients' lives[1].