Events Calendar

The virtual meeting provides patients and caregivers with an opportunity to share their personal experiences regarding the symptoms and daily impact with CCDS to FDA representatives, academic and scientific researchers, medical professionals, and pharmaceutical companies.

During the month of February, the Global Liver Institute will lead the third annual Rare Liver Diseases Month to promote awareness and educate people about the diverse range of liver diseases.

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. DMD is a genetic disorder that cause gradual loss of muscle function and weakness.

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, but only ordinary (European) member organizations have a vote.

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 living with Duchenne and Becker to learn the latest progress in the fight to end Duchenne.

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 Acid Oxidation Disorders (FAODs) in Denver, CO, from July 21–23. It is an event dedicated to advancing knowledge and collaboration in the field of mitochondrial […]

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 who are no longer with us.

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 about rare diseases and their impact on the lives of people affected.

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 scientists dedicated to finding cures, and acknowledge parents, siblings, and caregivers who work tirelessly to support those with MPS and ML.