Ultragenyx Patient Advocacy

MitoAction & INFORM International Metabolic Conference
2023-07-21 08:00 - 2023-07-23 17:00 (America/New_York) | Denver, CO
MitoAction & 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 Acid Oxidation Disorders (FAODs) in Denver, CO, from July 21–23. It is an event dedicated to advancing knowledge and collaboration in the field of mitochondrial and metabolic disorders.

CCDS Awareness Day
2024-02-01 08:00 - 17:00
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
2024-02-15 08:00 - 17:00
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
2024-02-29 08:00 - 17:00
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.

National OI Awareness Week/International OI Day
2024-05-06 08:00 - 17:00
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
2024-05-15 08:00 - 17:00
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.

Worldwide Awareness Month
2024-06-01 08:00 - 2024-06-30 17:00
The month of June is meaningful to the CDKL5 community. Every year in June, the CDKL5 community works to educate and raise awareness about the disorder.

Newborn Screening Awareness Month
2024-09-01 08:00 - 2024-09-30 17:00
In September, organizations across the country raise awareness about the importance of screening newborns for potential illnesses and genetic disorders.
Learn more

XLH Day
2024-10-11 - 2024-10-13
Each year, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong.
