Archive for April, 2010

Apr 26 2010

Upcoming Events: Genetic Alliance Webinar Series (April 30, May 12, 19 and 26 – 2010)

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HTML clipboardUpcoming Events: Genetic Alliance Webinar Series (April 30, May 12, 19 and 26 – 2010)

For additional information or to register for these upcoming events, please visit Registration is free. If you do miss a session or a presentation, recordings will be made available online afterwards


Friday, April 30, 2010 (12:00pm – 1:30pm EST) – The Myriad Gene Patent Case – What Does it Mean, and Why Does it Matter?

Please join the conversation regarding this high-profile lawsuit and controversial topic, moderated by Professor John Conley of the University of North Carolina School of Law. Joining him will be Hans Sauer of BIO, which opposes the plaintiffs’ position; Josh Sarnoff, who filed an amicus brief on behalf of the American Medical Association supporting the plaintiffs and Ann Waldo, Senior Counsel for Genetic Alliance.

John Conley – Professor of Law, University of North Carolina at Chapel Hill
Joshua Sarnoff – Professor & Associate Director, Glushko-Samuelson Intellectual Property Law Clinic, Washington College of Law, American University
Hans Sauer – Associate General Counsel for Intellectual Property, BIO
Ann Waldo – Senior Counsel, Genetic Alliance

Wednesday, May 12, 2010 (12:00pm – 1:00pm EST) – The Congenital Conditions Program: From Legislation to Implementation.

The aim of the Congenital Conditions Program is to create replicable, sustainable mechanisms for patient support and education. Since the fall of 2009, the project has undergone new developments. This webinar will discuss the legislation and the corresponding HRSA program guidance, as well as the overarching project goals of HRSA and Genetic Alliance.

Natasha Bonhomme – Vice President of Strategic Development, Genetic Alliance
Victoria Miller – Executive Director, Trisomy 18 Foundation
Lenee Simon – Public Health Analyst, Genetic Services Branch, MCHB, HRSA

Wednesday, May 19, 2010 (12:00pm – 1:00pm EST) – What’s New with the Newborn Screening Clearinghouse?

Genetic Alliance and partners are developing the nation’s first clearinghouse of newborn screening (NBS) information; aiming to increase the awareness of NBS and improve the understanding, and decision-making capacity of families, health professionals , industry and the public. This webinar will showcase the latest updates to the NBS C and plans for future development. Topics to be discussed include the NBSC public blog, educational features, and stakeholder feedback gathered at recent national meetings.

Natasha Bonhomme – Vice President of Strategic Development, Genetic Alliance
Lenee Simon – Public Health Analyst, Genetic Services Branch, MCHB, HRSA

Wednesday, May 26, 2010 (12:00pm – 1:00pm EST) – Activism through Documentary Film

How can film transform our advocacy? In some cases, existing campaigns are captured on film, spreading a cause farther than could otherwise have been accomplished. Sometimes a film itself is the mission driver. Presenters will share their experiences working in this accessible medium and explore how art has impacted their activism.

Dan Habib – “Including Samuel”
Marc Smolowitz – “The Power of Two”
Anabel Stenzel – “The Power of Two”, Genetic Counselor, Stanford University Medical Center
Isabel Stenzel – “The Power of Two”

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Apr 20 2010

Celebrating the Health & Ready to Work (HRTW) National Resource Center: Findings, Recommendations and Thanks

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The HRTW is offering a topical call on Wednesday, April 21, 2010 at 3:00pm (EST) for all Title V CYSHCN Directors, Transition care workers, NBS Educators, F2F Centers, Family and Youth Leaders, MCHB, Medical Home, and others.

The main focus of the call will be to:

  1. Describe changes in state CYSHCN systems promoting transition preparation.
  2. Describe progress in promoting transition from pediatric to adult medical homes.
  3. Describe youth leadership development
  4. Discuss promoting involvement in personal decision making in preparation for transitioning to adult health.
  5. Discuss HRTW programming with families to help them plan for transition with their teens.
  6. Discuss examples of inter-agency collaboration to promote transition to adult health care with funding, work, and community involvement.

To join the HRTW call:

Dial-in Number: 1-800-567-5900 Access Code: 870036#

The call is FREE, but pre-registration is strongly recommended to help us understand who is participating and plan for further calls. Pre-register for this event and see more information at

Powerpoints, handouts and resources will be posted during the next few days on the materials page at

Archives from the 13 previous HRTW Topical Calls are at:

If you have any questions or comments, please contact Toni Wall (PI & Director of HRTW) at or

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