Tuesday, August 21, 2018

The International PTEN Family Council

The International PTEN family council is a collaborative effort between PTEN Italia and The PTEN Hamartoma Tumor Syndrome Foundation. To be considered, participants must be 18 years of age.  If chosen to serve you are committing to a 2-year term and will be required to sign a volunteer waiver and Non- Disclosure Agreement to ensure confidentiality.

The PTEN Hamartoma Tumor Syndrome Foundation and PTEN Italia’s International Council for Patients and Families

Aims:

  • Promote the mission of the PTEN Hamartoma Tumor Syndrome Foundation and PTEN Italia Collaborative.
  • Develop vital links and good relationships with PTEN Hamartoma Tumor syndrome (PHTS), Cowden’s syndrome (CS) and Bannayan-Riley-Ruvalcaba syndrome (BRRS) communities.
  • Develop links with researchers and other parties who could benefit the health and well-being of patients and families.
  • Assist in developing and sharing the Collaborative’s knowledge of the range of health and care issues which affect patients and families.
  • Provide input and feedback on the delivery of healthcare services for children and adults with these genetic conditions.
  • Identify and liaise with Clinical Centers which demonstrate excellence in the diagnosis and care of patients with PHTS or other related syndromes.
  • Advocate for policies and programs which benefit the health and well-being of patients and families.
  • Assist in developing policies and programs through collaboration with PHTS, CS and BRRS communities, and others.
  • Share current ‘best-practice’ guidelines on diagnosis, screening, surveillance and clinical care of patients.
  • Review issues and concerns raised by the Council by patients, caregivers, and others, and recommend matters for discussion with board members of the PHTS Foundation and/or PTEN Italia.
  • Assist in the planning of events for patient and family communities.

Our mission is to assemble a collective voice to influence:

  • provision of good quality information and support for those affected by PTEN Hamartoma Tumor syndrome, Cowden’s syndrome, and Bannayan-Riley-Ruvalcaba syndrome.
  • an increase in clinicians’ awareness of the implications PHTS, CS and BRRS can have on the health and well-being of patients and their families.
  • the quality of medical care for patients.
  • the development of treatments to counter the effects of the genetic mutations associated with these syndromes.