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Showing articles from General Resources tag

Chasing Cures: The Power of Patients

For many rare diseases, the existing research fields could be more efficient and patient-centric to speed up discovery. David Fajgenbaum, MD will take you on his journey battling Castleman disease. When he nearly died for the first of five times and needed multiple rounds of multi-agent chemotherapy, he realized that …

Challenge Your Limits

A panel of strong, creative patients and advocates moderated by [The Two Disabled Dudes][1] will discuss how they thrive while navigating life with a rare disease. Speakers: Kyle Bryant, Sean Baumstark, Onno Faber, Neena Nizar, PhD, Katie Stevens [1]:

Eating Well Taking Care of Yourself through Nutrition

Successful management of certain rare diseases includes adherence to a strict diet that limits consumption of fat, protein and/or carbohydrates. Learn how to read nutrition labels, utilize mobile nutrition apps created by advocacy organizations, and get tips on navigating work functions and enjoying social engagements…

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]:…

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 …

Family Planning: Decisions and Considerations

Deciding when and if to have children can be complicated for people who have a rare disease or are carriers. Even knowing when and how to raise the issue with a romantic partner can be stressful. Learn about the role of genetic counselors in family planning, technologies such as in-vitro fertilization with preimplanta…

RARE Webinar Poster Presentation 2

Watch the second webinar of our three-part series on poster presentations. Learn the do's and don'ts of engaging poster presentations from experts, Mousumi Bose and Benjamin Ford. [Download Slides][1] [1]:

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