Ultragenyx Patient Advocacy

Walk for Strength 2021
2021-08-21
Save the date! More information to come.
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ACD Virtual Conference 2021
2021-08-13 08:00 - 2021-08-14 17:00 (America/New_York)

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.
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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.
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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.
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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.
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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.
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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.
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