Event dates may change due to the evolving COVID-19 pandemic. We encourage you to check specific event websites for the most up-to-date status.

If you would like to have your event added to the list, please contact patientadvocacy@ultragenyx.com.

Loading Events

Events Search and Views Navigation

Event Views Navigation

July 2021

MitoAction FAOD Monthly Support Call

July 8

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…

Find out more »

The MAGIC Foundation’s 27th Annual Convention

July 15 - July 18

Details coming soon!

Find out more »

Rare Disease Week on Capitol Hill

July 19 - July 22

Rare Disease Week on Capitol Hill, hosted by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is designed to educate and activate advocates…

Find out more »

August 2021

MitoAction FAOD Monthly Support Call

August 12

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…

Find out more »

September 2021

Newborn Screening Awareness Month

September 1

In September, organizations across the country raise awareness about the importance of screening newborns for potential illnesses and genetic disorders.

Find out more »

MitoAction FAOD Monthly Support Call

September 9

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…

Find out more »

Association for Glycogen Storage Disease Patient/Family/Medical Conference

September 10 - September 11

The Association for Glycogen Storage Disease holds a family/medical conference each year for those affected with GSD, their families, and medical professionals involved in treatment or research of any type…

Find out more »

Mitochondrial Disease Awareness Week

September 13 - September 18

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.…

Find out more »

RARE Patient Advocacy (un)Summit

September 14 - September 25

Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Due to the COVID-19 pandemic, and the…

Find out more »

October 2021

Newborn Screening Bootcamp

October 2

The EveryLife Foundation for Rare Diseases and Expecting Health at Genetic Alliance invite you to a virtual five-part training series designed to educate and engage newborn screening stakeholders. Throughout the…

Find out more »
+ Export Events