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
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 call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAOD. Register
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 September 10. Learn more and register
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. 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 […]
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 call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAOD. Register
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
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 call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAOD. Register
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 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. […]
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 call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAOD. Register
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, medical professionals, and pharmaceutical companies.
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.
