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Showing articles from Advocacy tag

Summit Day 1: Session 3- Shaping Regulatory Policies That Put Patients First

[Summit Day 1: Session 3- Shaping Regulatory Policies That Put Patients First][1] from [Global Genes][2] on [Vimeo][3]. [1]: https://vimeo.com/107307095 [2]: https://vimeo.com/globalgenes [3]: https://vimeo.com

The Secret Sauce for Forward Movement in Research and Scientific Collaborations

[The Role of a Chief Science Officer: The Secret Sauce for Forward Movement in Research and Scientific Collaborations][1] from [Global Genes][2] on [Vimeo][3]. [1]: https://vimeo.com/296049067 [2]: https://vimeo.com/globalgenes [3]: https://vimeo.com

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]: https://vimeo.com/107370274 [2]: https://vimeo.com/globalgenes [3]: https://vimeo.com

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…

THRIVE: Game Changing the World of Rare Disease through Collaboration

[THRIVE: Game Changing the World of Rare Disease through Collaboration][1] from [Global Genes][2] on [Vimeo][3]. [1]: https://vimeo.com/295602735 [2]: https://vimeo.com/globalgenes [3]: https://vimeo.com

Summit Day 2: Session 7- Preparing for Success- Lobbying At The State And Federal Level

[Summit Day 2: Session 7- Preparing for Success- Lobbying At The State And Federal Level][1] from [Global Genes][2] on [Vimeo][3]. [1]: https://vimeo.com/107358516 [2]: https://vimeo.com/globalgenes [3]: https://vimeo.com

Patients and Advocates as Entrepreneurs: New Models for Drug Development

Some rare disease patients and advocates have forged a path as entrepreneurs – funding or building companies to focus on rare disease research. Learn from business leaders and patients about what resources are needed, what the process involves, and how to decide if this option is for you. Speakers: Imran Babar, PhD, …

Summit Day 2: Session 4- Deep Dive, Mobilizing Your Community For Patient-Focused Drug Development

[Summit Day 2: Session 4- Deep Dive, Mobilizing Your Community For Patient- Focused Drug Development][1] from [Global Genes][2] on [Vimeo][3]. [1]: https://vimeo.com/107276743 [2]: https://vimeo.com/globalgenes [3]: https://vimeo.com

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

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