Ultragenyx Patient Advocacy

Newborn Screening Bootcamp
2021-10-02 | Sacramento, CA, Sacramento, CA, United States
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 five sessions you will learn how to facilitate a pilot study, build coalitions, navigate the recommended uniform screening panel (RUSP) nomination process, and prepare infrastructure to address challenges.
Learn more

RARE Patient Advocacy (un)Summit
2021-09-14 08:00 - 2021-09-15 17:00 (America/New_York)
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 threat it poses to the health and safety of the rare disease community, they replaced this highly anticipated event with the Global Genes LIVE! A RARE Patient Advocacy (un)Summit.
Throughout September, a variety of interactive and educational online events, meet-ups, workshops and performances will provide members of the rare disease community with opportunities to connect and engage with each other. Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can implement immediately to accelerate change.
Find out more

Association for Glycogen Storage Disease Patient/Family/Medical Conference
2021-09-10 08:00 - 2021-09-11 17:00 | 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 of GSD. The focus of these conferences is meeting other people and families affected by GSD, gaining a better understanding of the GSDs and their implications, and learning about the latest research findings and upcoming studies.
Learn more

Walk for Strength 2021
2021-08-21
Save the date! More information to come.
Learn more

ACD Virtual Conference 2021
2021-08-13 08:00 - 2021-08-14 17:00

Virtual Rare Disease Week on Capitol Hill
2021-07-14 08:00 - 2021-07-22 17:00
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 and to foster relationships within the community.
Learn more

CDKL5 Alliance International Virtual Family Conference
2021-06-19
The CDKL5 Alliance’s International Virtual Family Conference will be ‘a la carte,’ meaning participants will be able to visit their website on June 19 or later and view pre-recorded presentations from the speakers outlined in the agenda. All presentations will be in English with subtitles available in Spanish, Italian, French, German, Russian and Japanese.
Learn more

Connected Together: 35th Annual National MPS Society Virtual Family Conference
2021-06-18 08:00 - 2021-06-27 17:00
Mark your calendars to join NMPSS on June 19-20 and 26-27 for their 35th Annual Family Conference! The conference will be held virtually, with sessions taking place across four days. There will be a kickoff the evening of June 18 with breakout sessions for families and individuals with MPS or ML.
Learn more

National MPS Society Maritime Gala
2021-05-15 | Tiburon, CA, Tiburon, CA, United States
Join the National MPS Society for an evening of intrigue and philanthropy at the historic Corinthian Yacht Club in Tiburon, CA, founded in 1886. This event will feature silent and live auctions, cocktails, hors d’oeuvres, live entertainment, and an exclusive VIP opportunity.
Learn more

Rare Across America
2021-02-22 08:00 - 2021-03-05 17:00
Rare Disease Legislative Advocates (RDLA) staff will organize virtual meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The RDLA team will also help prepare advocates for their meetings, provide legislative resource materials, and host pre-meeting training webinars.
No prior advocacy experience is necessary. Registration for this event and all RDLA events are free for rare disease advocates.
Learn more

17th Annual WORLDSymposium
2021-02-08 08:00 - 2021-02-12 17:00
WORLDSymposium will conduct the 2021 annual research conference virtually. WORLDSymposium Virtual 2021 will include many of the core elements of the in-person conference with new innovations that the virtual platform allows. These changes will include new ways to connect with other attendees, announce new research and trials, and interact with sponsors.
Learn more
