NEWS | September 15, 2014

Katherine Rauen named 2014 Rare Champion of Hope honoree


Katherine Rauen, professor in the Department of Pediatrics and a physician-scientist affiliated with UC Davis MIND Institute and UC Davis Children’s Hospital, has received the 2014 Rare Champion of Hope Honoree in Science. The honor, awarded by the Global Genes Project, recognizes her unwavering commitment to rare disease, her investment in new treatments and her care and respect for patients.

Photo of Katherine Rauen
Katherine Rauen receives her Rare Champion of Hope Award in Science from Stephen Groft, director of the National Institutes of Health's Office of Rare Diseases Research.

The award was presented at the Global Genes Project’s Tribute to Champions of Hope Gala awards ceremony on Saturday, Sept. 13 at the Hyatt Regency in Huntington Beach, Calif.

Rauen also participated in the Global Genes Project’s 2014 Patient Advocacy Summit on Sept. 11-12 at the Hyatt Regency. She took part in a session about must-have collaborations for successful drug development.

"I am so honored to just be nominated for this award, let alone win this prestigious honor," said Rauen. "Working together as a team with advocacy groups, RASopathiesNet, CFC International, CSFN and NF Inc, CA is rewarding and productive – these are very focused groups of dedicated individuals and families, and we all have the same goal in mind, to provide best medical practices and treatment for RASopathies."

Rauen is an internationally respected leader in studying the Ras/MAPK pathway genetic syndromes, and coined the term “RASopathies.” Ras/MAPK regulates cell growth, which is critical for normal fetal development and, when dysregulated, can cause cancer. She launched the UC Davis NF/Ras Pathway Clinic last month.

Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope - the Blue Denim Genes Ribbon.

The UC Davis NF/Ras Pathway Genetics Clinic provides comprehensive health-care support and management for children and adults throughout their life span who have or are at risk for having one of the RASopathies, a clinically defined group of medical genetic syndromes. These include neurofibromatosis type 1 (NF1), NF2, Noonan syndrome, Costello syndrome and cardio-facio-cutaneous (CFC). The RASopathies are caused by germline alterations in genes that encode components or regulators of the Ras/mitogen-activated protein kinase (MAPK) pathway. Together, the RASopathies represent one of the largest groups of genetic syndromes affecting greater than 1 in 1000 individuals. The clinic provide comprehensive support to our patients and ongoing consultative assistance for primary care providers caring for individuals with a Ras pathway disorder. The clinic is located at UC Davis MIND Institute. For additional information about the NF/Ras Pathway Clinic, please call Liga Bivina, the clinic's coordinator, at 916-703-0371.

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