Ultragenyx Patient Advocacy

2022 OIF National Conference
2022-07-09 - 2022-07-10
The 2022 OIF National Conference will be held virtually during the weekend of July 9, 2022. More details to come!
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Third Annual Cross Country Challenge Kickoff
2022-06-23
More details coming soon.
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Virtual Capitol Hill Visits with Senators and Representatives
2022-06-23

XLH Awareness Day
2022-06-23
June 23 is X-linked hypophosphatemia (XLH) Awareness Day. Each year, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong.
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PPMD Annual Conference
2022-06-22 - 2022-06-26 | Scottsdale, AZ
A comprehensive annual, international conference focused entirely on Duchenne.
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DIA 2022 Global Annual Meeting
2022-06-19 08:00 - 2022-06-23 17:00 (America/New_York)
The DIA 2022 Global Annual Meeting brings together thousands of innovators from around the globe to discuss updates in the ever-changing field of life sciences.
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Worldwide CDKL5 Awareness Day
2022-06-17
Each June, the CDKL5 community works to educate and raise awareness about the disorder. June has special meaning to the CDKL5 community, and June 17 is Worldwide CDKL5 Awareness Day.
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Spontaneous Parent Group Meeting
2022-06-15

Million Dollar Bike Ride
2022-06-11 07:30 - 17:00 | Philadelphia, PA
The Penn Medicine Orphan Disease Center (ODC) will host the 9th Annual Million Dollar Bike Ride on Saturday, June 11, 2022, to raise money for rare disease research.
Learn more and register

Global Genes 2022 RARE Drug Development Symposium
2022-06-08 - 2022-06-10
The RARE Drug Development Symposium, in partnership with the Orphan Disease Center of the University of Pennsylvania, is designed to connect, educate, and inspire rare disease participants, whether they’re beginning or advanced. This program convenes key stakeholders across patient advocacy, research, and drug development to engage on emerging challenges, and new frameworks to advance rare disease research and therapeutic development.
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Los Angeles Regional Meet-up
2022-06-04

CureDuchenne Futures Conference
2022-05-27 - 2022-05-29 | Orlando, FL
This conference focuses on bringing education, resources, and connection to the Duchenne community in a family-friendly environment.
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International MPS Awareness Day
2022-05-15
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.

Napa MPS Race for a Cure
2022-05-01 10:00 - 14:00 | Napa, CA
Join the National MPS Society in Napa, California for the 6th Annual Napa MPS Race for a Cure on May 1, 2022. This event will be held at Kennedy Park and will feature a 5K run, 1 mile walk, family picnic, raffle, and silent auction!
Register

Adolescent/Young Adult Group Meeting
2022-04-20

Aging with XLH Group Meeting
2022-04-20

Raleigh Run for Rare
2022-03-26 08:00 - 12:00 | Raleigh, NC
Join the National MPS Society at Dorothea Dix Park on March 26th for the Raleigh Run for Rare! This event will feature a 5K run, 1 mile walk, and post-run family picnic at Harvey Hill.
Register

Advocacy Webinar and Virtual Capitol Hill Registration Kickoff
2022-03-23

2022 MDA Clinical & Scientific Conference
2022-03-13 08:00 - 2022-03-16 17:00 | Orlando, FL
The 2022 MDA Virtual Clinical & Scientific Conference will take place March 13-16, in a hybrid environment, which will include scheduled live-broadcast sessions, on-demand videos, networking sessions, exhibits, and poster sessions.
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MitoAction FAOD Monthly Support Call
2022-03-10
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 call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAOD.
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Wilson Disease Awareness Month
2022-03-01 - 2022-03-31

Rare Disease Day
2022-02-28
Rare Disease Day takes place on the last day of February every year. The main objective of the day is to raise awareness among decisionmakers and the general public about rare diseases and their impact on the lives of people affected.
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International Angelman Day
2022-02-15
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.
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CCDS Awareness Day
2022-02-01
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.
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EveryLife Foundation Community Congress Annual Meeting
2021-12-08 | Washington, D.C., DC, United States
The Community Congress is a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together. The Congress is a strategic advisory council, providing advice and insight on urgent policy issues and EveryLife Foundation programs and initiatives. It is comprised of four working groups that work on self-selected projects to advance policy for rare disease patients.
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10th Anniversary RareVoice Awards
2021-12-07 | Washington, D.C., DC, United States
Details coming soon!

Rare Disease Scientific Workshop
2021-10-20 | Washington, D.C., DC, United States

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.
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RARE Patient Advocacy (un)Summit
2021-09-14 08:00 - 2021-09-15 17:00
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.
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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.
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