Nashville Rock and Roll 5K Run and 1 Mile Walk
Nashville, TNThe 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 […]
Long Beach Sprint to Save 5K Run and 1 Mile Walk
Long Beach, CAJoin 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 […]
Mitochondrial Disease Awareness Week
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. […]
2022 PCORI Annual Meeting
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
FAST’s 15th Annual Global Science Summit & Gala
Foundation for Angelman Syndrome Therapeutics (FAST). For more information
International Day of Persons with Disabilities
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 […]
MitoAction FAOD Monthly Support Call
Join MitoAction and call host, FAOD Mom Stephanie Harry, on the second Thursday of each month for a support call for families affected by fatty acid oxidation disorders (FAOD). This […]
Externally led Patient Focused Drug Development (PFDD) Meeting on Cerebral Creatine Deficiency Syndromes (CCDS)
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, […]
Rare Liver Disease Month
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 […]
Duchenne Muscular Dystrophy (DMD) Awareness Week
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. […]
2023 OIFE Annual General Meeting
Stockhome, SwedenThe 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, […]
PPMD’S 2023 Annual Conference Dallas, TX
Scottsdale, AZThe 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 […]
