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.
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 diseases.
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. DMD is a genetic disorder that cause gradual loss of muscle function and weakness.
International Angelman Day
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
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.
Wilson Disease Awareness Month
The month of March is dedicated to raising awareness about Wilson disease, a rare genetic disorder characterized by excess copper stored in the liver, brain, and other organs. Wilson disease is progressive, and the body's inability to remove the excess of copper could be fatal if left untreated.
National OI Awareness Week/International OI Day
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.
International MPS Awareness Day
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.