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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

The Value of Rare Disease Therapies: Patient Perspectives Needed

There is a lot of public debate surrounding the value of rare disease therapies. How do we ensure that the perspectives of patients, families, and advocates are included in these discussions and assessments? Advocates and economic experts will discuss new thoughts on the value of therapies and how advocates can get in…

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/…

Patients and Caregivers: Shaping Clinical Drug Development

Starting a clinical trial is no simple task. From developing a protocol to patient recruitment to U.S. Food and Drug Administration (FDA) submission, there are a wide array of complex and closely monitored processes along the way. Patient and community involvement help ensure study questions are relevant and that the …

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