CCDS Awareness Day
February 1 is Cerebral Creatine Deficiency Syndrome (CCDS) Awareness Day. Find out how you can celebrate this day and help spread awareness of CCDS in your community.
International Angelman Day
The purpose of International Angelman Day is to raise awareness of the condition, mobilize people to action, encourage fundraising, promote research and educational resources, and remember those people with Angelman […]
Rare Disease Day
Rare Disease Day takes place on the last day of February every year. The main objective of the day is to raise awareness among decision makers and the general public […]
National OI Awareness Week/International OI Day
During this week the Osteogenesis Imperfecta (OI) community members educate and raise awareness on the condition. They celebrate Wishbone Day, the international Day of Awareness for OI.
International MPS Awareness Day
Every year on May 15, the mucopolysaccharidosis (MPS) and mucolipidosis (ML) community comes together to recognize those diagnosed, think about the loved ones who have been lost, thank doctors and […]
Worldwide Awareness Month
The month of June is meaningful to the CDKL5 community. Every year in June, the CDKL5 community works to educate and raise awareness about the disorder.
Newborn Screening Awareness Month
In September, organizations across the country raise awareness about the importance of screening newborns for potential illnesses and genetic disorders. Learn more
XLH Day
Each year, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong.
