Awareness & Recognition
Rare Disease Awareness Month
Rare Disease Month is a global initiative to raise awareness and cultivate support for all those on a rare disease medical journey. It occurs every year in February and ends on Rare Disease Day (the last day of February).
It is estimated that 1/10 Americans and 1/12 Canadians have a rare disease, the majority of which are children.
Leukodystrophy Awareness Month
September is Leukodystrophy Awareness Month! The leukodystrophies are diseases that cause a degeneration of the myelin, or “white matter,” of the brain and spinal cord. Other organs and systems can be affected as well. Without myelin, the nerves cannot conduct a proper impulse, resulting in disability and loss of major functions.
Adrenoleukodystrophy Awareness Month
November is Adrenoleukodystrophy Awareness Month and is a month devoted to awareness of the ALD and those impacted by it.
Newborn Screening Awareness Month
September is also Newborn Screening Awareness Month, which is dedicated to raising awareness of the importance of newborn screening tests.
Newborn screening comprises a series of blood tests to detect numerous medical conditions that are not apparent at birth.
These tests help identify and treat illness early, preventing serious health problems, disability, and death if left undetected.
Celebrate Being Rare!
Advocacy
Advocacy to raise awareness, increase newborn screening, support research, and ensure equity of access to treatment.
Resources
Library of links to advocacy and treatment resources for ALD and other rare diseases in Canada and the U.S.
Remembering & Honouring Their Stories
We’re keeping their memory alive by sharing stories of the children lost to ALD and other rare diseases.