TERMS AND CONDITIONS
- This platform has been created with the sole purpose of providing connection means to patients and patient associations worldwide to discuss and exchange information on various aspects related to thalassaemia.
- The Facebook, Twitter, Discussion Board, and YouTube platforms are patient- administered. TIF fully supports the initiative and effort and is available for providing all other information that may be needed throughout the development and use of the platforms.
- The opinions voiced in this forum will not necessarily represent the Thalassaemia International Federation and may not always coincide with TIF formal positions, which can be found in the Federation’s Policies and Position Papers
- Patients and participants cannot act outside their roles i.e., provide medical advice. Expert Patients may voice their own views and opinions on psychosocial issues and other experience-based matters. Expert Patients and non-medical practitioners cannot however provide medical advice of any sort and are obliged to bring such requests to the attention of TIF, who will then refer them to expert medical advisors accordingly.
- By participating in this forum, participants agree and consent to random monitoring that TIF will be carrying out throughout the use of these platforms to ensure the smooth and proper function of the project in line with the initial objectives of the project and that no false or misleading information is being exchanged.
- All parties involved have given a written consent to participate in the proposed channels, complying thus with the European legislation on personal data protection.
- The project comprises a variety of mediums with different confidentiality protocols and policies.
- Facebook page will be open to the public. Subsequently, all content will be available to public access.
- Access to discussion boards will be restricted to members and will thus remain confidential.