In the company of
parents, protectors, and proud partners in care.
Where are you in your
rare journey?
The rare community is made up of millions of unique experiences. But shared experiences, common challenges, similar passions, and united voices tie everyone in it together. These Rare Journey Resources are designed to provide access to information for many of the common phases of the rare journey and empower you to reach out and get involved.
Understanding Drug Development
You have the power to improve and speed the drug development process. Visit Understanding Drug Development to learn more about how to get involved, and watch our video to see how Ultragenyx incorporates patients—including you— into our drug development.
In the company of rare.
Every experience with a rare disease or chronic illness is unique. The stories of those in the rare community strengthen, inspire, and drive us forward. You are the guardians, givers, greatest of groundbreakers, the advocates and altogether awe-inspiring. We’re proud to be in your company.
Amanda
Wilson Disease (WD)“Wilson disease affects many parts of my daily life because you literally have no idea what you are going to wake up to the next morning.”
Reyna
CDKL5 Deficiency Disorder (CDD)“This disorder is always two steps ahead of us so we take it one day at a time.”
Levi
Duchenne Muscular Dystrophy (DMD)“I have Duchenne, my muscles are different, but I am a lot more than my Duchenne.”
Community Conversations
Listen to a panel of incredible advocates moderated by The Two Disabled Dudes.
Upcoming Community Events
Participate in Events Near YouMay 6
During this week the Osteogenesis Imperfecta (OI) community members educate and raise awareness on the condition. They celebrate Wishbone Day, the international Day of Awareness for OI.
May 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 […]
