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Showing articles from Advocacy tag

Susannah Cahalan - 2019 RARE Patient Advocacy Summit Keynote

With exquisite detail and raw honesty, Susannah Cahalan reveals her personal journey from a promising young writer with a clean bill of health to a restrained hospital patient descending into madness. Employing her award- winning journalistic skill, Cahalan uncovers valuable insight into the human brain and incites im…

The New Normal: Patient Communities Drive Innovation

Rare disease advocacy communities and patients are reshaping care and support programs as well as research through innovation. Join leading patient advocates to learn the ins and outs of patient-driven innovation to change outcomes. Speakers: PJ Brooks, PhD, Kevan Chandler, Deborah Requesens PhD, & Luke Rosen

Global Genes LIVE: The Next Generation of RARE Changemakers

For young adults navigating major life changes already, COVID-19 has added new and evolving pressures that test young adults' resolve, resilience and mental well-being. Having a rare disease only further complicates an already complex path for many. Bringing together advocacy veterans and newcomers alike, this session…

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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