Duncan Webster
Father of Maria Webster
Foundation Glycosylation Trustee
"The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals: a booming story of sugar trees"
September 1-2, 2013, Barcelona
RARE DISEASE DAY 2025: February 28th
Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms. The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
Rare Disease Day highlights opportunities to advocate for human rights at local, national, and international levels as we work towards a more inclusive society. It raises awareness for the 300 million people living with rare diseases around the world for whom we strive to achieve equitable access to diagnosis, treatment, health and social care, and social opportunity.
Rare Disease Day is a great example of how progress continues to be made. In 2008, events took place in just 18 countries; events are now held in over 100 countries.
CONTACT
Foundation Glycosylation
Saint John Regional Hospital Foundation
Level One, Saint John Regional Hospital
400 University Avenue
P.O. Box 2100
Saint John, New Brunswick, Canada
E2L 4L2
DONATE NOW
The FoG, a local not-for-profit, supports research on the development of therapies targeting Congenital Disorders of Glycosylation (CDG), helps raise awareness of the disorder, and advocates for individuals living with these rare enzyme deficiencies.
