The Individuals Seeking Cures Showcase was part of this year’s World Healthcare Innovation and Technology Congress to show the increasingly important role of patient advocacy groups in advancing healthcare. Thanks to technological advances, patient groups can have a greater impact than ever before, banding together around the globe and reaching out to many more research groups and funding sources. As a result, advocacy groups are spearheading many critical health care initiatives, including the search for cures.
The WHIT Individuals Seeking Cures Showcase featured breakthrough strategies spanning every aspect of advocacy from fund-raising through drug discovery. For access to any of the showcase abstracts or posters please click on a title below.
Alpha-1 Antitrypsin Deficiency
J. Walsh, Alpha-1 Foundation
|
 Download PDF (24KB)
|
Cancer Information & Support Network Collaborative Advocacy Model
Devine P, Cancer Information & Support Network, Inc. (CISN). ABSTRACT.
|
Download PDF (11KB)
|
Cancer Information & Support Network Collaborative Advocacy Model
Devine P, Cancer Information & Support Network, Inc. (CISN). POSTER.
|
Download PDF (71KB)
|
Consumer Directed Biotechnology Solutions
P. Terry, Genomic Health, Genetic Alliance, Personalized Medicine Coalition, and PXE International.
|
Download PDF (11KB)
|
Genetic Alliance
L. Wise, E. Alfano, J. O’Leary, A. Dodd, S. F. Terry, all of The Genetic Alliance. Abstract. ABSTRACT.
|
Download PDF (12KB)
|
Genetic Information Nondiscrimination Act
J.O'Leary, E. Alfano, S.F. Terry, Genetic Alliance & Coalition of Genetic Fairness. ABSTRACT.
|
Download PDF (10KB)
|
Genetic Information Nondiscrimination Act
S.F. Terry, Genetic Alliance & Coalition of Genetic Fairness. KEYNOTE PRESENTATION.
|
Download PDF (1MB)
|
National Database of People with Prader-Willi Syndrome (PWS)
J. Kane, PWS Association USA.
|
Download PDF (11KB)
|
Overcoming Chromosome Abnormalities
C Burzio, The Chromosome 18 Registry & Research Society.
|
Download PDF (15KB)
|
Pachyonychia Congenita (PC) Project
M. Schwartz, PC Project. ABSTRACT.
|
Download PDF (18KB)
|
Pachyonychia Congenita (PC) Project:
M. Schwartz, PC Project. POSTER.
|
Download PDF (164KB)
|
PHAction -- Providing Tools for Grassroots Success
K. Kroner, Pulmonary Hypertention Association. ABSTRACT
|
Download PDF (13KB)
|
PHAction -- Providing Tools for Grassroots Success
K. Kroner, Pulmonary Hypertention Association. PRESENTATION
|
Download PDF (155KB)
|
PHAware: Building Grassroots Connections with the Media
K. Kroner, Pulmonary Hypertention Association. ABSTRACT
|
Download PDF (11KB)
|
PHAware: Building Grassroots Connections with the Media
K. Kroner, Pulmonary Hypertention Association. PRESENTATION
|
Download PDF (37KB)
|
Pioneering the Use of Growth Hormone in Prader-Willi Syndrome (PWS)
J. Kane, PWSUSA.
|
Download PDF (13KB)
|
Project IMPACT -- Improving Patient Accrual to Clinical Trials
N. Roach, C3: Colorectal Cancer Coalition; P. Devine, Cancer Information and Support Network; N. Fredericks, American College of Radiology Imaging Network; B. LeStage, American Cancer Society
|
Download PDF (25KB)
|
The Osteogenesis Imperfecta Foundation (OIF)
H.A. Shapiro, OIF.
|
Download PDF (11KB)
|
The Osteogenesis Imperfecta Foundation (OIF)
H.A. Shapiro, OIF. POSTER
|
Download PDF (61KB)
|
The Power of Passion, Partnerships, Programming, and Public Awareness
A. Gordon, The Progeria Research Foundation. ABSTRACT.
|
Download PDF (22KB)
|
The Power of Passion, Partnerships, Programming, and Public Awareness
A. Gordon, The Progeria Research Foundation. KEYNOTE PRESENTATION.
|
Download PDF (781KB)
|
Orphan Products Development: Uncommon Incentives to fight Uncommon Diseases
Debra Lewis, Director, Orphan Products Grants Program, FDA. KEYNOTE DISCUSSION/PRESENTATION.
|
Download PDF (349KB)
|
The Search to Tame Pseudoxanthoma Elasticum
S.F. Terry, C. Vocke, Terry, P. F., Terry, S.F. PXE International. ABSTRACT.
|
Download PDF (20KB)
|
The Search to Tame Pseudoxanthoma Elasticum
S.F. Terry, C. Vocke, Terry, P. F., Terry, S.F. PXE International. POSTER.
|
Download PDF (1.4MB)
|
TRAIN -- The Research Acceleration and Innovation Network
G. Simon, FasterCures. ABSTRACT.
|
Download PDF (13KB)
|
Collaboration for Innovation
G. Simon, FasterCures. KEYNOTE PRESENTATION.
|
Download PDF (907KB)
|
Two Mothers Discover GERD is Genetic and Pave the Road for a Cure
E. Pulsifer-Anderson, Pediatric Adolescent Gastoesophageal Reflux Association ABSTRACT
|
Download PDF (21KB)
|
Two Mothers Discover GERD is Genetic and Pave the Road for a Cure
E. Pulsifer-Anderson, Pediatric Adolescent Gastoesophageal Reflux Association. ABSTRACT
|
Download PDF (21KB)
|
Two Mothers Discover GERD is Genetic and Pave the Road for a Cure
E. Pulsifer-Anderson, Pediatric Adolescent Gastoesophageal Reflux Association. POSTER
|
Download PDF (106KB)
|
In addition to the featured abstracts and posters, the presentations from the Keynote Session will be available after November 11, 2005. The Showcase keynote speaker is Hamilton Jordan, former White House Chief of Staff, 3-time cancer survivor, patient advocate, best-selling author, founder of the $1 billion Georgia Cancer Coalition, and investor and founder of numerous start-ups, largely in health sector.
The abstract presentations at the Keynote Session are by Sharon Terry, President and CEO of Genetic Alliance; Audrey Gordon, President and The Executive Director of The Progeria Research Foundation; and Greg Simon, President of FasterCures.
Poster discussants are: John Reher, President and Executive Director of ABC2 (Accelerate Brain Cancer Cure); Kathy Hudson, Director of the Genetics and Public Policy Center at Johns Hopkins University; and Debra Y. Lewis, Director, Orphan Products Grants Program, Office of Orphan Products Development.
|
Printer Friendly
Email A Colleague
Bookmark Page