Presenter:
Sharon Terry - President and CEO, Genetic Alliance

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Developing an Effective Abstract [pdf]

This is the second of two webinars preceding Genetics Day on the Hill 2008. Speakers present an overview of the Genetic Information Nondiscrimination Act, followed by a discussion of GINA's implications and role in addressing health information technology and genetic testing.

Presenter:
Patrick F. Terry - Director of Consumer and Patient Advocacy, Genomic Health, Inc.
Robert M.Tennant - Senior Policy Advisor, Medical Group Management Association
Jeremy E. Gruber - Legal Director, National Workrights Institute

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GINA: Employment Discrimination [pdf]
Health Information Technology:An Overview [pdf]
Genetic Testing [pdf]
Answers to Questions Asked During the Webinar [pdf]

This is the first of two webinars preceding Genetics Day on the Hill 2008. The webinar teaches Genetics Day participants and other interested individuals the policy basics. Speakers touch on the legislative process, communication with policymakers during Hill visits, and strategies on making an impact in the policymaking process, with time for questions and answers.

Learn more about Genetics Day on the Hill.

Presenter:
Karen M. Hendricks - Assistant Director, Department of Legislative Affairs, American Academy of Pediatrics

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Faculty Development - Sinai [pdf]
Answers to Questions Asked During the Webinar [pdf]

Genetic Alliance invites organizations and communities to apply for CCFHH Program Awards of up to $10,000 to integrate the Does it Run in the Family? toolkit into their existing programs and initiatives. We will describe the new online tool for customizing family history materials (debuting Summer 2008) and discuss award requirements and qualifications. Learn more about this opportunity; all organizations and communities - local and national - are encouraged to apply!

Presenter:
James O'Leary - Chief Operating Officer, Genetic Alliance
Vaughn Edelson - Project Coordinator, Genetic Alliance

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Community Centered Family Health History Program Awards [pdf]

The Access to Credible Genetics Resources Network, a CDC funded project, has produced the Quality Assessment Toolbox to evaluate and produce quality and appropriate educational materials. The Quality Assessment Toolbox consists of three parts: the Quality Scale, the Content Scale, and the Usability Scale. Join us February 2 for the soft launch of this online tool. Learn how to make these tools work for you and your organization.

Presenter:
Kate Reed - National Coalition for Health Professional Education in Genetics
Pat Furlong - Parent Project Muscular Dystrophy
Meredith Weaver - University of Maryland

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Participants learned how wikis use open source values and shared ownership for collaborative teaching and learning. In addition, directions were provided on how to contribute to wikigenetics.org and wikiadvocacy.org, two wikis recently launched by Genetic Alliance.

Presenter:
Amelia Chappelle - Genetic Alliance

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The Wiki Phenomenon [PowerPoint]

This webinar explored ruubi.com, a free fundraising system and gave listeners a chance to decide if presented tools were appropriate for their organization's toolbox.

Guest presenter:
Rick Brown - Hot Salsa Interactive

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Slideshow demonstrating Ruubi Session descriptions are provided by the presenter. This webinar is informational. Products and services are not endorsed by Genetic Alliance. Want to learn more about a different service or company? Let us know by clicking here.

This engaging session gave attendees tips on how to effectively communicate with members of Congress. Though this opportunity was tailored for Genetics Day on the Hill participants, all parties interested in educating members of Congress about policy concerns found this session beneficial.

Guest presenter:
Joann Boughman - American Society of Human Genetics

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Basics on Educating Members of Congress [PowerPoint]

During this webinar volunteerism and the challenges that face national organizations were discussed. In this session, participants learned about different methods of management, how to engage different types of volunteers, and strategies for evolving their program as their organization grows.

Guest presenters:
Jannine Cody - President, The Chromosome 18 Registry and Research Society
Jan McKenzie - National Support Groups and Volunteer Services Manager, National Psoriasis Foundation

Download session materials:

Jannine Cody's Presentation [PowerPoint]
Jan McKenzie's Presentation [PowerPoint]

During this webinar participants learned how to be proactive in writing winning proposal by developing a case statement, searching for the right funding partners, developing a stretegic plan for proposal development, and using the all-important opening page to grab attention.

Guest presenter:
Laura DeShano - CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder)

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Grant Writing Tutorial [PowerPoint]

This teleconference was an information session about the Genetic Alliance Institute for Advocacy in preparation for the Spring 2007 meeting in Los Angeles, California. The Institute cultivates highly effective consumer advocates by preparing leaders for engagement in community building and outreach along with advisory work that impacts health care delivery and scientific research.

Speaker:
Elizabeth Burden

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In this call, participants learned more about grassroots fundraising for rare conditions. They learned how to create customizable materials and projects that can be used on a community level and how to make their rare disorder the greatest asset in local fundraising. This was the first session in the Money Matters Fundraising Series.

Guest presenters:
Audrey Gordon, Progeria Research Foundation
Jennifer Thornton, A-T Children's Project
Jonathan Martin, National Marfan Foundation

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National Marfan Foundation Activities Planning Guide [Web link]
Miracle Makers - the Progeria Research Foundation [Web link]
Events Section - the A-T Children's Project [Web link]

Participants learned how to create a brochure that people will want to pick up and read! Paula Raimondo of the Health Sciences Library at the University of Maryland and Melissa Allen of Melissa Allen Design provided pointers on developing attractive, readable brochures at the right level for the target audience.

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This session introduced a tool to help determine what to include in informational, disease-specific materials. Pat Furlong, President of Parent Project Muscular Dystrophy, explained how she used the tool in preparing a DVD on Duchenne Muscular Dystrophy.

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It is important to separate quality information from 'junk' and to understand the difference. We have been working with a number of partners on a metric to assess quality of information. Bring your webpage, brochure, fact sheet, or anything else you'd like to assess, to this session. Meredith Weaver, a genetic counselor at University of Maryland School of Medicine, will explain how to use the metric to assess and improve written information.

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The November and December sessions were sponsored by the Access to Credible Genetics Resources Network, funded by a cooperative agreement from the CDC.

Pat Furlong, President of Parent Project Muscular Dystrophy, led an engaging session on effective communication with members of Congress. Though this teleconference was tailored for Genetics Day on the Hill participants, all parties interested in educating members of Congress about policy concerns found this session beneficial.

Download session materials:
Tips That Will Make You a Good Advocate [Web link]

This teleconference discussed what entails "good design" in terms of designing brochures and other important documents for your organization. Melissa Allen (melissaallendesign.com), a graphic designer who has worked closely with Genetic Alliance in this last year, led the call and helped members gain a basic understanding of how using appropriate design techniques can help clarify your message and audience goals.

This session gave instructions for writing your own patient story. Communicating about genetic conditions can mean more than describing symptoms or gene markers; it can also mean telling real life stories of your experiences with or because of your condition. The talk was led by Elizabeth Weil, a 2003 recipient of the Genetic Alliance Art of Report Award who has published articles in Time Magazine, the New York Times, and other publications. In addition she has written several books including Crib Notes: A Random Reference for the Modern Parent.

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During this teleconference participants learned how to manage their liability and select a policy that offers maximum protection. At this special session geared towards not-for-profit organizations' needs, the featured speaker was J. Andrew Cooley, CIC, AAI, a specialist and the Nonprofit Program Director for Lighthouse Underwriters. Special guest was Kelly Leight of CARES Foundation.

During this session we took a fresh look at how health information can be best communicated to a diverse membership and collaborators. We discussed such questions as: What is the literacy level of your brochures? Do you have separate hand-outs for patients and scientists? Do you have both web and print resources? Do you consider cultural competency when producing materials? Answering these questions is necessary if you want to make the largest impact possible with limited resources.

Guest presenter:
Patricia A. Cloonan, R.N., Ph.D., of the School of Nursing and Health Studies, Georgetown University.

Media Strategies was an introduction to how organizations can begin developing a relationship with the media. We discussed translating information about a specific condition into talking points, working with reporters, writing press releases, and more.

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Introductory Media Strategies agenda

This session was a discussion of the ins and outs of being an effective member of federal and state advisory committees. Some of us are called upon to serve on advisory committees, and some wish to serve. How can we all be effective spokespeople? How do we participate in the most meaningful way?

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Best Practices for Best Practices