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
- 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.