Annual Conference 2009 Materials
These presentations and materials were provided by presenters for their respective sessions. If you do not see a session title in the list below, materials were not provided for that session.
Research Daylong Symposium
GRANDRx: Crafting a Plan for Rare Disease Drug Development
- Unprecedented Therapeutic Opportunities for Rare and Neglected Diseases by
Francis Collins - Assays and Therapeutic Development for Rare and Neglected Diseases by Jim Inglis
- Therapeutics for Rare and Neglected Diseases: Creating a Breakthrough Systems Process for Moving from Targets to Clinical Candidates by Chris Austin
- Drug Discovery for Cystic Fibrosis: A Bench to Bedside Collaboration between Vertex Pharmaceuticals and Cystic Fibrosis Foundation by Melissa Ashlock
- The Regulatory Issues for Drug Development throughout the Pipeline by
Sandra Kweder - Building a Registry for Rare Disorders: The Importance of Fitting into a Global System by Vanessa Rangel Miller
- Friedreich’s Ataxia Research Alliance — Patient Registry by Felicia DeRosa
- Technical & Business Model Considerations by Kyle Brown
- Supplemental material for the panel “Building a Registry for Rare Disorders”
- Systems for a Patient-centered Enterprise for Rare and Neglected Diseases by
Patrick Terry
Services Daylong Symposium
Novel Methods of Service Delivery
- Family Health History for the Duke Employee Community by Julianne O’Daniel
- Guidance for Nurse Distribution of CCFHH booklets (@ Duke) by Julianne O’Daniel
- Cultural Competency to Provide Quality Care for Patients and Their Families by Martha Carvalho
- Promoting Caregiver Well-Being Among Parents Raising a Child Diagnosed with Smith-Magenis Syndrome by Sarah Elsea
- Improvement of Sickle Cell Knowledge After Education by Kusum Viswanathan
- Periodic Paralysis: Identifying Orchids by Linda Feld
- Rare Disorder Partnership Successes: The U.S. Hemophilia Model by Judith Baker, Val Bias, and Diane Aschman
WORKSHOPS: SESSION I
Building a Sustainable Future for Access to Treatment: Policy and System Implications
Integrating Consumer Perspectives into Newborn Screening
- Intergrating Consumer Perspectives into Newborn Screening by Natasha Bonhomme
- Iowa Family Participation Project by Kimberly Nobel Piper
Open Access: What it Means for Research
Incorporating Family Health History into Practice
- Assessment of the Experiences of Primary Care Providers Regarding the Use of Family History in Their Practice by Janet Williams
- Incorporating Family Health History Into Practice by Mary Beth Bigley, Greg Feero, Christopher Lamer
WORKSHOPS: SESSION II
Slicing and Dicing Comparative Effectiveness
- Comparative Effectiveness Through the Policy Lens by Glenna Crooks
- Comparative Effectiveness Research from a Caregiver’s Perspective by
Stephanie Mensh
CGEN Project: Culturally Sensitive Interventions to Improve Genetic Literacy
- The CGEN Project: Development, Implementation, and Testing of Genetics Education Materials for Use in Community and Clinical Settings by Diane Gross and Penny Kyler
- A Model for Leadership Development Among Latinas to Increase Awareness and Reduce Health Disparities by Claudia de la Cruz
- Genetics and Family Health History in the Tongan Community by Louisa Stark
- Improving Genetic Literacy of African Americans in the Metro Washington, DC Area by Finie Richardson
WORKSHOPS: SESSION III
Health IT Enabled Amplification of Genetic Test Results
- Health IT Enabled Amplification of Genetic Test Results by Grant Wood and
Richard Wilmot
Responsible Genetics Research with Cultural and Linguistic Minority Groups
- Responsible Genetics Research with Cultural and Linguistic Minority Groups by Christina Palmer, Patrick Boudreault, Yoko Kobayashi
Family Health History from the Ground Up — Web 2.0 and Community Outreach
- Community Centered Family Health History Project Focus Group Findings by Penelope Moore, Caroline Lieber, and William Gratzer
- The Heredity Project by Vicki Park
- Family Health History from the Ground Up: Web 2.0 and Community Outreach by Vaughn Edelson and James O’Leary
WORKSHOPS: SESSION IV
Diagnosing Disability Through Genetic Testing: A Social Justice Perspective
- Diagnosing Disability Through Genetic Testing: A Social Justice Perspective by Jessica Lehman, Ikeita Cantu Hinojosa, and Suzanne Shepherd
An Eye for Design: How to Catch and Keep Your Audience
- An Eye for Design: How to Catch and Keep Your Audience by Robert Miller, Kate Reed, and Therese Nissen
Open Dialogues on Issues in Genetics and Genomics: Ethical, Theological, and Political Systems
Data Collection and Specimen Storage: How Do We Talk About Blood Spots?
