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 […]
MitoAction & INFORM International Metabolic Conference
Denver, COMitoAction & 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 […]
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.
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 […]
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 […]
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 […]
