Events Calendar

The Nashville Rock and Roll 5K Run and 1 Mile Walk will take place on Saturday, August 6 as a part of the National MPS Society’s Annual Family Conference! Transportation will be provided to and from the event, which will be held at Centennial Park. Check back for more information regarding departure times. Learn more

Join the National MPS Society for the first annual Long Beach Sprint to Save event! This 5K run and 1 mile walk will be held at Shoreline Aquatic Park on September 10. Learn more and register

During the third week of September, the Mito community comes together to raise awareness for Mitochondrial Disease Awareness Week. Thousands of families face the reality of living with mitochondrial disease. During Awareness Week, MitoAction and Mito families do their part to educate others about mitochondrial disease. Awareness is important year-round but highlighting these issues during […]

The 2022 PCORI Annual Meeting will feature keynotes, plenaries, and breakout sessions that highlight a range of timely and important topics around patient-centered research. Learn more

Foundation for Angelman Syndrome Therapeutics (FAST). For more information

The United Nations’ day of international observance aims to promote an understanding of disability issues and mobilize support for the dignity, rights, and well-being of persons with disabilities. The term disability is used to refer to individual functioning, including physical impairment, sensory impairment, cognitive impairment, intellectual impairment, mental illness, and various types of chronic disease. […]

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.