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

June 2020

Worldwide CDKL5 Awareness Day

June 17

Each June, we work to educate and raise awareness about CDKL5 Deficiency Disorder. June has special meaning to the CDKL5 community, and June 17th is Worldwide CDKL5 Awareness Day.

Find out more »

FSHD Connect Conference

June 27 - June 28
Washington, D.C.

The annual FSHD conference is a gathering of patients, families, researchers, and healthcare providers.

Find out more »

July 2020

International Metabolic Conference

July 24 - July 26
Pittsburgh, PA

MitoAction and the Organic Acidemia Association (OAA) will be co-hosting the 2020 International Metabolic Conference free of charge for parents, affected individuals, family members, and friends. Professionals are also invited…

Find out more »

2020 CCDS Scientific + Patient Symposium

July 30 - August 2
Park City, UT

Hosted by the Association for Creatine Deficiencies (ACD), this conference is intended for members of the scientific and medical community, as well as the Cerebral Creatine Deficiency Syndromes (CCDS) patient…

Find out more »

September 2020

Newborn Screening Awareness Month

September 1

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

Find out more »

Association for Glycogen Storage Disease Patient/Family/Medical Conference

September 11 - September 12
Cleveland, OH

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 »

ASBMR 2020 Annual Meeting

September 11 - September 14
Seattle, WA

Join thousands of bone and mineral scientists for four days packed with networking and educational opportunities, all under one roof at the Palais des congrès de Montréal. With more than…

Find out more »

12th Annual Rare Disease Scientific Workshop

September 15
Washington, D.C.

The EveryLife Foundation for Rare Diseases will convene its 12th Annual Rare Disease Scientific Workshop to facilitate and help guide improvements in the development process for rare disease treatments. The…

Find out more »

2020 PCORI Annual Meeting

September 16 - September 17
Arlington, VA

At this year’s Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, members of the healthcare community will come together for updates on how scientists, patients, caregivers, clinicians, payers, and others are…

Find out more »

RARE Patient Advocacy Summit

September 21 - September 23
San Diego, CA

Global Genes’ RARE Patient Advocacy Summit brings patients, caregivers and advocates together to share best practices, create important introductions, and help catalyze powerful collaborations. It offers many unique opportunities to…

Find out more »
+ Export Events