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Showing articles from Registries tag

Data, Data, Data: Sharing and Owning Data to Game Change Rare Disease Research

[Data, Data, Data: Sharing and Owning Data to Game Change Rare Disease Research][1] from [Global Genes][2]. [1]: https://www.youtube.com/watch?v=7Vfj3Q_wBLM [2]: https://www.youtube.com/channel/UC3kGR-FsXTEbtGj1Ljg4CxA

Global Genes LIVE!: Elevate Natural History Study Planning and Reach

Patient organizations play a critical role in leveraging their communities’ data to drive innovation and access to therapies. Learn how you can develop the capacity at your own organization for improved data collection and governance. Explore methodologies for data collection and registry models, and start acceleratin…

RARE Patient Advocacy Summit

_**Please join us for our**_ 3rd Annual “RARE Patient Advocacy Summit_”_ held on **September 11-12, 2014** at the Hyatt Regency in Huntington Beach, California. _**Empowering Patient Advocates to Become Successful ****Activists**_ [Download Agenda][1][ (PDF) ][2][Download Speaker Bios][3] (PDF) Download PDF slides: [D…

Building Valuable Registries and Natural History Studies

View [Building Valuable Registries and Natural History Studies on Youtube ][1] [1]: https://www.youtube.com/watch?v=grE5JAF4HQM&feature=youtu.be

RARE Drug Development Symposium: Improving Clinical Transparency & Data Sharing

It’s well known that data sharing and collaboration when advancing rare disease research is beneficial to all. TJ Sharpe and Jenn McNary discuss how patient populations, organizations, and industry members can better create an environment of transparency.

RARE Drug Development Symposium: Advancing Clinical Transparency & Data Sharing in Rare Research

It’s well known that data sharing and collaboration when advancing rare disease research is beneficial to all. TJ Sharpe and Jenn McNary discuss how patient populations, organizations, and industry members can better create an environment of transparency.

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