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Showing articles from General Resources tag

Summit Day 2: Session 8- Putting Into Practice- 21st Century Cures

[Summit Day 2: Session 8- Putting Into Practice- 21st Century Cures][1] from [Global Genes][2] on [Vimeo][3]. [1]: [2]: [3]:

Summit Day 2: Opening Remarks

[Summit Day 2: Opening Remarks][1] from [Global Genes][2] on [Vimeo][3]. [1]: [2]: [3]:

Summit Day 1: Session 2- E-Patient Revolution

[Summit Day 1: Session 2- E-Patient Revolution][1] from [Global Genes][2] on [Vimeo][3]. [1]: [2]: [3]:

Update from the Community: Quality of Life Markers

[Update from the Community: Quality of Life Markers][1] from [Global Genes][2] on [Vimeo][3]. [1]: [2]: [3]:

Next: Imagining the Future of Rare Disease

Over the next decade, we have the potential to transform the rare disease landscape, bringing forward new pathways to diagnosis, new treatments, and new ways to deliver care. Join us to learn more about how the rare disease odyssey is evolving with new solutions created by patients and advocates working with researche…

Advances in Rare Immunological Diseases

Recent advances in rare immunological diseases have raised the exciting potential of cures for some disorders. Hear from experts about what advances in gene and cell therapies might mean for patients. Speakers: Manish Butte, MD, PhD & Claudia Gonzaga-Jauregui 

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…

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 …

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]:

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