Events Calendar

Duchenne Muscular Dystrophy Awareness Week begins on February 13th through the 19th to call national attention to DMD, support patients and families suffering from this rare disease, and raise money for research. […]

The OIFE Annual General Meeting (AGM) will be held in Stockholm Sweden from June 10-11, 2023. All organizations are invited to attend and to speak at the annual general meeting, […]

The Parent Project Muscular Dystrophy (PPMD) will host the 2023 Annual Conference from June 29 - July 2. The conference brings together families, physicians, researchers, caregivers, industry partners and those […]

MitoAction & INFORM International Metabolic for Families and Individuals Impacted by Fatty Acid Oxidation Disorders Denver, CO MitoAction & INFORM will host the 4th Annual International Metabolic Conference for Fatty […]

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.

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 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 […]

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.

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 […]

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.

In September, organizations across the country raise awareness about the importance of screening newborns for potential illnesses and genetic disorders. Learn more

Each year, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong.