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Showing articles from General Resources tag

Genetic Testing: Getting To a Diagnosis

Technology has advanced tremendously over the last decade. The costs of tests are decreasing. Genetic testing is on the rise, but it is still unfamiliar territory for most patients and caregivers and even many physicians. We wrote this guide to help you understand your options and make good decisions. Only you can d…

RARE Webinar: Thyroid Eye Disease Awareness and Education

Learn valuable information about thyroid eye disease and treatment options in this webinar. Designed for patients and their families, the panel of experts will empower you with knowledge and help you create a community of support and hope. [Download Slides][1] [1]: https://globalgenes.org/wp-content/uploads/2019/…

Finding Answers: The Importance of Communicating with Clinicians

The average time for a rare disease patient to be accurately diagnosed is eight years and often requires seeing a variety of specialists. Given the likelihood of a misdiagnosis during this process, it is critical for patients and their caregivers to trust their instincts and advocate for themselves. Hear from experts …

Crafting a Career: Making a Fulfilling Professional Life with a Rare Disease

Finding the right job can be challenging, especially for those living with a rare disease. In this session, we explore what opportunities and accommodations are available for landing a fulfilling career. Hear from successful business professionals living with a rare disease and human resources experts on ways to navig…

Rare Disease Research: Getting Your Disease Noticed

When a disorder is rare, it can be difficult to identify a healthcare professional or researcher with experience in that particular diagnosis. In this session, listen to experts who have mastered the art of identifying ways to bring their cause to the forefront and learn how you can develop partnerships with academic …

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