Launch of a Canadian Expert Center for Complement-Mediated Rare Diseases (CHU Sainte-Justine Centre d’expertise sur les maladies rares médiées par le complément)
This new Expert Center aims to revolutionize the understanding, diagnosis, and treatment of complement-mediated rare diseases. The center features a multidisciplinary team of health care professionals with expertise and active participation in panels with international experts, utilizing a ‘bench to bedside’ approach to work simultaneously on research and with patients.
Complement-mediated diseases occur when the complement system, a part of a person’s immune defenses, becomes overactive or out of balance. This can result in the immune system attacking the body’s own cells, causing damage to organs and tissues. Some well-known examples of these conditions are atypical hemolytic uremic syndrome (aHUS), C3 glomerulopathy (C3G), and paroxysmal nocturnal hemoglobinuria (PNH).
Having a dedicated center of skilled clinicians and researchers with deep expertise in complement-mediated diseases (to include aHUS) has a wide array of benefits, to include more expanded access to advances in medicine and expedited options for diagnostic testing.
Press Release Links: LEARN MORE
Get details about the launch of this Canadian Expert Center for Complement-Mediated Rare Diseases (available in 2 languages, English and French)
ENGLISH: Read the 30 April press release from the CHU Sainte-Justine Centre
FRANÇAIS : Lire le communiqué de presse du 30 avril de CHU Sainte-Justine Centre
Did You Know….
Atypical HUS patients and their families are very fortunate to have a robust Canadian patient organization, a non-profit advocacy group called aHUS Canada and formed in November 2012 with the mission of supporting patients and families living with aHUS. As noted on the aHUS Canada website, they strive to: connect those affected by the condition, build public awareness and understanding of this very rare disease, and advocate for the best possible care and treatment for aHUS patients. Their hard work shows great results, most recently with a well received conference held on April 25 & 26th in Toronto (see the Facebook page of aHUS Canada for some event snapshots).
The Canadian Organization for Rare Disorders (CORD) is a national network for organizations representing all those with rare disorders. From the CORD website: “CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.”
