PTEN Hamartoma Tumor Syndrome Foundation Releases Center of Excellence Application

Thursday, September 20, 2018 General News
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This application is the first initiative to advance the care and treatment of patients affected by PTEN Hamartoma Tumor Syndrome (PHTS). PHTS, a thought to be under-diagnosed hereditary cancer syndrome that puts patients at high risk of developing multiple types of cancer including breast, thyroid, colon, kidney, and endometrial cancer, melanoma, potentially autism, and other benign issues.

HUNTSVILLE, Ala., Sept. 19, 2018 /PRNewswire-PRWeb/ -- According to Kristin Anthony, President

of the PTEN Foundation, this initiative is "a must for our patients. This is a huge step to set the highest standard of care for patients with PHTS. We are pleased with this progress and thankful for the opportunity to work closely with our External Scientific Advisory Board to meet a significant unmet need of our patient community. We are making it easier for our community to find a center with experienced, and knowledgeable specialists who follow appropriate screening guidelines." For centers interested in applying, the full application will be available at: PTEN Hamartoma Tumor Syndrome Foundation

  • Positive Patient Impact:

PHTS patients often state that there is a gap in care for the PHTS community, expressing the need for a focus on care coordination. "I have dreamt of the day where our family can spend less time being full-time care managers and gain our life back," said Lori Ortega, patient, and caregiver. "I am excited to lessen the burden of constantly managing appointments and care, thus improving our family's overall quality of life." Candace Allday, coming from a multigenerational PHTS family, states that "the time spent seeking care for their family is exhausting." She believes this initiative is encouraging multidisciplinary teamwork across care specialties where communication will not only improve patient care but will also advance research. Candace also states that seeking care for herself and family has "been a struggle," and that the PTEN Foundation encouraging the highest standard of care for our community "is a step in the right direction." Charis Eng, MD, Ph.D., Chairman of Cleveland Clinic's Genomic Medicine Institute and Director of the Center for Personalized Genetic Healthcare, is the chair of the PTEN Foundation's External Scientific Advisory Board and helped drive the Centers of Excellence application and designation process to completion. Dr. Eng shares that "all PHTS patients deserve coordinated care from multiple healthcare specialists under one roof who have seen and treated other patients with PHTS and are knowledgeable regarding PTEN features and screening guidelines."

  • Driving Excellence:

The PTEN Foundation aims to reduce the burden of multiple hours spent seeking care from different physician offices and hospitals, bringing an entire multidisciplinary care team with PHTS expertise under one roof. We believe that this Centers of Excellence program will provide hope for our community and will drive excellence for PHTS patient care and research. We want to thank our External Scientific Advisory Board and PTEN Italia for their support and input in the development of the Centers of Excellence program and application.

The PTEN Hamartoma Tumor Syndrome (PHTS) Foundation advocates for PHTS Patients. The Foundation provides patient support by connecting patients and researchers and fostering collaborations to advance PHTS research.

The PTEN Hamartoma Tumor Syndrome (PHTS) Foundation is a 501C3 foundation founded in December 2013. EIN 46-4279769

For more information, press only: Thomas Houser 1-256-520-8851 Tom.houser(at)whitespaceinnovations.com

To learn more about PTEN Hamartoma Tumor Syndrome visit: http://www.ptenfoundation.org

 

SOURCE PTEN Hamartoma Tumor Syndrome Foundation



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