Community Engaged Network for All (CENA) is one of 29 projects funded by the Patient Centered Outcomes Research Institute (PCORI) to form a new national resource that will accelerate health research. The new network, which involves millions of Americans, is called PCORnet. Genetic Alliance leads this project, which is a collaborative of eleven disease advocacy organizations, the University of California San Francisco, the University of California Davis, and Private Access.
Genetic Alliance is one of the world’s leading nonprofit health advocacy organizations. Its network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs.
A nonprofit, nongovernmental organization located in Washington, DC. The PCORI mandate is to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions.
Celiac Disease Foundation drives diagnosis, treatment and a cure for celiac disease through advocacy, education and research to improve the quality of life for all people affected by gluten-related disorders.
Facilitates the rapid translation of research to improvements in patient and community health. It is a cross-school, campus-wide institute with scientist leaders at its helm.
Dartmouth's faculty are among the world's leading scholars, expanding human knowledge through research at the highest level.
Provides information and support services to families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders, to encourage the medical commmunity's research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.
- A nonprofit organization that has been providing information about the disorder to families all over the world since 1992
- An international network of parents who share knowledge, experience, and emotional support
- Educates physicians and their support teams as well as increasing public awareness
- Supports research endeavors worldwide and provides members with the latest healthcare recommendations, in collaboration with our Scientific Advisory Board.
PXE International promotes research and supports individuals affected by pseudoxanthoma elasticum (PXE). We work on behalf of individuals and their families to improve quality of life through advancing research, educating clinicians and supporting individuals.
One of 10 campuses in the University of California — the world’s pre-eminent public university system — UC Davis is known for its academic excellence and global impact.
The leading university exclusively focused on health, UCSF is driven by the idea that with the best research, the best education and the best patient care converge, great breakthroughs are achieved.
AliveAndKickn aims to improve the lives of individuals and families affected by Lynch Syndrome and its associated cancers through research, education, and screenings.
My primary area of research is on the behavioral aspects of cancer prevention and survivorship in families with hereditary cancer syndromes. Specifically, I am interested in developing interventions to improve health behaviors in this population, with a focus on improving patient-provider communication. Recent projects include comparing Lynch syndrome-associated colorectal cancer survivors with sporadic controls to examine similarities and differences in the cancer survivorship experience and examining screening behaviors and patient-provider communication regarding gynecologic cancer risk for women with Lynch syndrome.
Dr. Yurgelun is a gastrointestinal medical oncologist at the Dana-Farber Cancer Institute affiliated with both the Gastrointestinal Cancer Center and the Cancer Genetics and Prevention Program. He has a longstanding special interest in studying the diagnosis, phenotypes, and management of patients with Lynch syndrome and other hereditary gastrointestinal cancer syndromes.
Professor, Department of Behavioral Science, Division of Cancer Prevention and Population Sciences, The University of Texas MD Anderson Cancer Center, Houston, TX
Dr. Karlitz presented his population based Lynch Syndrome screening research at the Colorectal Cancer Prevention Plenary at the Annual American College of Gastroenterology (ACG) meeting in 2014 and was awarded the prestigious ACG Governors Award for excellence in clinical research.
Ms. Hampel has been a cancer genetic counselor since 1995 and is a faculty member in the Division of Human Genetics. Her research interests include screening all colorectal and endometrial cancer patients for Lynch syndrome, the American Founder Mutation (exon 1-6 deletion in MSH2) as a cause of Lynch syndrome and the etiology of MSI-negative familial colorectal cancers.