Daylong Symposia: Organizational Development
Friday, July 16, 2010
9:00 AM - 6:00 PM

Back by popular demand, this daylong, comprehensive, hands-on training gives advocacy group key staff and volunteers the skills to grow their organizational capacity. This year, the Organizational Development workshop will be divided into two emphasis areas. First, the course will focus on strategic planning, fundraising in a challenging economy and partnership. Participants will come away from this part of the day with tools for prioritizing organizational needs and resources to achieve their mission.

In the second half of the day, we’ll turn our focus to technology, communications, patient databases and the world of informatics. We will cover everything from new media, including websites, blogs and social networking, to Open Source technologies, Medicine 2.0 applications, the e-Patient and online patient communities and how these new technologies and paradigms alter the research landscape and scientific communication.

We’ll also look closely at disorder-specific databases that contain important clinical and detailed genetic information about their members and families. These carefully curated chronicles may be the most comprehensive resource that exists for many disorders.  Their information may contain keys to unlock treatment and management breakthroughs for others.  This workshop explores the possibilities - and the pitfalls - of moving de-identified clinical and genetic information from privately held databases into a web-based public infrastructure supported by the National Center for Biotechnology Information (NCBI).

Small group discussions, take away tools, and individual exercises will create a fast-paced, layered day of learning. The first part of the day will be presented by Lisa Wise, Genetic Alliance Chief Operating Officer, whose six–year tenure with Genetic Alliance and work with a breadth of organizations in all stages of development offer an ideal anchor for the day. Lisa has over a decade of experience with strategic planning, organizational operations, media relations, marketing, grant writing, fundraising, and staff and volunteer development. The technology portion of the course will be facilitated by Jim Bialick, Assistant Director of Technology Innovation; Alyson Krokosky, Genetics Resources and Services Manager and Mark Petruniak, Genetic Alliance Technology Assistant.

Hope Leman, Research Information Technologist from the Center for Health Research and Quality Samaritan Health Services, will offer a presentation on web design tips for disease advocacy organizations, and Lisa Forman Neall, Staff Scientist from the National Center for Biotechnology Information, National Library of Medicine, National Institutes of Health, will present on patient data migration.