Leuodystrophy Awareness Month

September is Leukodystrophy Awareness Month. A leukodystrophy is condition that causes degeneration of the myelin, or "white matter" of the brain. All people need healthy myelin for speed and accuracy of nerve impulses. You can learn more about the many types of leukodystrophies at Alex TLC Support at https://www.alextlc.org/.

#Dazzle4Rare 2021

Get ready to join the dazzle again this year for a full seven days of rare disease awareness and community message signal boosting!

Ataxia Awareness Day

International Ataxia Awareness Day (IAAD) is on September 25th of each year. It is a coordinated effort from individuals and Ataxia organizations around the world to help shed light on this rare disease.


World Encephalitis Day

World Encephalitis Day is the global awareness day for people who have been directly or indirectly affected by encephalitis.

Founded by The Encephalitis Society in 2014, it is held on February 22 each year and has reached over 200 million people through media features, events and social media.

Rare Disease Day


Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

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