Searching for a Diagnosis
Finding a diagnosis can be challenging. It can take several years for people living with a rare condition. If you feel like something is wrong but don’t know where to start, or you’ve been through several doctors and don’t know what to do next, these resources may be able to help guide you on the path to answers and care.
You’ve gotten a rare disease diagnosis. Now what? There is so much to learn and do that it will be overwhelming. Take your time and prioritize your needs. Try to remember that there is support out there and a community of people who are ready to help – because they’ve been where you are now. Here are links to several resources that may help you navigate this complex and uncertain time.
Managing Daily Life
It’s likely that your day-to-day routines will change after a rare diagnosis, and how you manage the condition over time may also change. Symptoms can evolve, new standards of care may appear, social environments fluctuate, and more. They say that the only constant is change and daily living with a rare disease includes coping and caring for your whole self – physically, mentally, emotionally, and socially.
Knowing where to go for information about the condition that impacts you or your family can be daunting or confusing. It’s difficult to know what a reputable and credible source may be. Over time, you will find yourself becoming an expert, even knowing more than many healthcare providers. These resources can help guide you on where you can look to get educated and find support and advice.
As someone living with a rare disease, it’s important to “own” it. You are your best advocate, and you can surround yourself with people who will support you throughout your journey. You may not have expected this journey, but these resources may be able to help you take ownership of it and live your best life.
Life is full of transitions. Growing up, going to school, starting a family, changing doctors. Almost everyone experiences these changes, but going through these while living with a complex illness may present additional or unique challenges. These resources will help you prepare and navigate.
Preparing to Advocate
The future may be uncertain, but it can still be filled with hope. There are ways you can plan for your individual future and contribute to a better and brighter future for the whole rare community – including those yet to come. Learn about opportunities to plan, participate, and make an impact for future generations.
These resources are intended for U.S. audiences only. Have a topic that you’d like us to address in your country? Contact us.
Share Your Rare Journey
Choosing to tell your story is a powerful way to advocate for yourself. Use this checklist to help you connect, educate, and inspire others to act.
COVID-19 Resources & Information
The ever-changing nature of the COVID-19 pandemic can lead to feelings of anxiety and uncertainty, especially for those living with rare and chronic conditions. We’ve compiled the below resources to help you manage and stay safe:
In the company of
defenders, disruptors, and the decidedly different.
Ultragenyx works side by side with organizations that provide educational resources and support for those affected by rare disorders. The advocacy groups listed on this page have information that is helpful across many diseases. They are often called “umbrella” organizations. For disease-specific advocacy organizations or information, check out the conditions we study.